Apart from last Sunday night, the week has been this steady cycle of minor seizures, deterioration physically, and sleeping. This has happened before in the pre-Avastin week. There have been no falling-over dramas, though with several concentration lapses there could have been.
I probably should have made this an end of month - even end of half-year summary, but my energy level is too low right now for such concentration. If I can manage that, I will, because a scrutiny of the first half of the year as a whole may be revealing.
Thursday, 27 June, 2013. 6.30 PM.
Things continue as they have been going, as we come to the last few days before scheduled Avastin treatment. I am in the middle of the PTU test, and constant seizures don't make it easier. But that part of it will be over tomorrow morning. We must wait and see whether Avastin will be given. That's on Tuesday because of the Queen's Birthday weekend three weeks ago. Que sera.
Tuesday, 25 June, 2013. 10:13 AM
Sunday night wasn't so good, for a variety of reasons, but things seem to have settled a bit since about 12 hours ago. In a 3-week cycle, I seem to have a period of small seizures, one or two big ones, a bad headache, and a quieter one. This one has been the same, except for the number of smaller ones, the location[s] of the bigger, and the strength and duration of the headache. In other words, an increase in intensity of the tumour activity. PTU test starts Thursday.
I have had no seizures today, and hope it signals the start of a more quiescent period. I better post this before I have to amend it!
Sunday, 23 June 2013. 11.50 AM.
Weekly roundup time. We have stopped recording the number of seizures as there are too many. Most are mild, as I've noted several times, but just before going to bed last night, I had a strong one that went on for several minutes longer than usual - one of those that made my head and neck convulse, and I wasn't able to speak properly for some time.
I am increasingly concerned at how my right hand is being affected as far as gripping the walker handle is concerned. There is no solution for that. The best thing is a long period between seizures, but one every couple of hours, however mild, seems to take a disproportionate toll on the right side. So we don't seem to be getting relief on that account.
The ache behind the knee seems to have gone most of the time. That's good.
Happy anniversary, Jan and Ken!
Thursday, 20 June 2013 3:15 PM.
An ache behind the knee strongly suggests the reactivation of a clot or clots after we took a break from Clexane. So it's back to daily injections from now on. If a clot or any part thereof finds its way to the brain or heart the story may come to a very quick ending.
We had our weekly visit from the Palliative Care nurse this morning, There wasn't a great deal to say. Things continue to take their course. Walking continues to become a bit more difficult each time. Seizures have been mild. I hope we don't encounter the usual one – or more – big one[s] this time around.
Wednesday, 19 June, 2013, 9:50 AM.
Things have settled down somewhat. I am getting several minor seizures per day but no dramas. There's nothing new worth reporting. That's good as far as I'm concerned. Blotches continue to come out on the right hand and arm, but that's par for the course. Why only the right arm, nowhere else, beggars my understanding.
Sunday 16 June, 2013, 10:30 AM.
Please see today's front of shop blog post. "I am Officially Very Poorly"
Thursday, 13 June 2013, 9:50 AM.
I'm feeling better today after the black day yesterday. Many of yesterday's symptoms are lessening as the benefits of the treatment start kicking in. I had a small seizure last night, so I hope it takes the place of the usual severe one round this time.
Wednesday 12 June 2013, 10:25 AM.
Blah! Avastin poisoning day. The morning after. I've noticed this as a growing phenomenon in the cycle. Headache, weakness, severe imbalance. Poor eyesight. Stomach pain. Sensitivity to sunlight. [I am forced to become a troglodyte even though it's a lovely mild day out there.] Red spots coming out on right arm and back of hand. Throat restriction. Little memory retention. Difficulty with keys and keystroke order.
I think I get more sensitive to the toxins each time rather than tolerant. It's like the tumour is fighting back, objecting strongly to any attempt to restrict it.
If the vague pattern we detect in the cycle allows prediction, the headache will gradually lessen through the day and I'll have a strong seizure within 48 hours of now.
Don't imagine being infused with Avastin for the 45th time doesn't have its price.
Tuesday, 11 June 2013 3:24 PM.
Back from Avastin infusion. The protein discipline is working quite well because the level was just slightly up from that of last time; i.e., dangerously high but not in the critical zone. We postponed the Oncologist appointment for a week because his plane had delayed him in Sydney and he was well behind with patients. We were just doing a routine one anyway.
In short, no dramas. So we do what we've been doing and take it day by day.
Sunday, 9 June 2013 7:37 AM.
Weekly roundup. Checking the last couple of entries below tells the story - the first half of the week dominated by seizures, and a quiescent period in the last. The seizures knocked me around a bit, but I feel strength returning if the seizure-free time lengthens. [It's not the seizures, I have to keep saying; it's what's causing them.] For a while until I get tired I make the best use of the time with physical tasks.
Not doing exercises for a couple of days trying to avoid seizures is extraordinarily weakening. I simply can't afford to do that. Resuming them gives strength to the right arm. I found an unpleasant side-effect of right-arm weakness was that I was in much more danger of falling, even with the walker. Balance is affected badly. Resuming exercise brings back the capacity to grip the right handle of it. I could barely do that mid-last week.
Losing that means total immobility and rapid decline of physical strength. Already it is much less. Immobility changes everything. I have to keep being able to get about for as long as I possibly can.
Tuesday [earlier I wrote "Monday" but it's a long weekend!] is the Avastin appointment. The kidney proteinuria reading is what will decide. We've done all we can to keep it under the limit.
Friday 7 June, 2013. 12.01 AM.
Briefly: seizures were continuing this morning so took to me bed. They seemed to settle but returned later and I have had a small period of comparative grace with only a few mild ones I will go to bed before I get tired. Tiredness brings them on. The PTU test ends early tomorrow. Just hoping for a quiet few days. A long weekend means no Avastin till Tuesday. I keep forgetting that.
Wednesday 5 June, 2013. 10.00 AM.
I've had many seizures over the past two-three days. None has been at high level until the one this morning at 9.30. I'd wakened earlier with a headache and it's increased in strength, but hope that having Panadol with the usual pills will settle it.
The number of seizures is worrying. Eyesight is affected, as is correctly ordering the letters to type [like dyslexia], or striking the right keys. It all slows me down, and tires me. Forgetting the next in a sequence of sentences also occurs. What I was going to say usually comes back, but long after it was needed.
Each seizure seems now to be affecting my right hand more. The exercise that I do to keep right-side strength seems to offend the tumour, which rushes to attack any newly-made neural pathways, or so it seems to me. So the arm frequently feels wrapped in an iron band. It also reduces the ability of the right hand to hold the walker securely, which is critical to my moving from room to room. During and just after a seizure, speech is affected.
It is 5 days until the next scheduled Avastin, if the PTU test allows. We just have to ride it out, but my body continues to weaken as the Avastin loses its capacity to keep the connections open. All I can do is try to stay active as long as possible.
This sequence of events over the three-week cycle is not unusual; just the intensity growing each time. Why would we not expect it?
Sunday 2 June, 2013. 10:30 AM.
It's raining very steadily here, with more on the way. It's kept the temperature up, which makes a difference to foot and ankle swelling. I woke early and could read, with feet out of covers completely and a pillow under my calves. The swelling disappeared but when the rain started, it got cooler. I slept again, covered up, and the foot-swelling soon returned.
I mention this because others may have the same condition and are worried about the swelling. When it can be made to come and go, it may not be too serious a concern. But a doctor is in a better position to know, particularly if you have other complications. Never set too much in store by what I say. It's just my experience in my case, and they're all different.
Since Wednesday, things have been calm, with little seizure activity and no headaches. I'll focus on watching protein intake from now till the PTU test starting Thursday.
As you see, I get little rest from the demands of the three week cycle, but as long as calm reigns, I don't complain too much. Not much point in that, is there? Meantime, week by week, my legs weaken in spite of my best efforts. Maybe I am pretending about what "best" means. I've got to keep mobile.
Wednesday, 29 May, 2013. 10:00 AM.
We could have struck disaster last night, showering when a seizure hit. Fortunately the whole showering process is now a sit down job, so it was a case of riding it out without collapsing. I wasn't particularly scared of falling off the seat, but the period of right-side paralysis afterwards meant a very shaky, cautious, careful and slow exit from the bathroom to the bedroom.
It's yet again a demonstration of how fast things can change. The bathroom remains far and away the most dangerous room in the house for me, because access is limited.
I had a rather restless night last night after waking at about 4 am. Somehow to find a comfortable position is getting harder. I'm a bit headachey and tired now after that stronger-than-usual seizure affecting the neck more and producing a head tremor until the seizure was over, and may be resting again soon.
Sunday, 26 May, 2013. 8:45 AM
Weekly roundup. In fact, because next Sunday brings us into June, I should look at the month as a whole. If there is a vague 3-weekly pattern, it's that there's one session of stronger seizures and headaches, a break for a day or two in seizures, and days when I get a series of smallish seizures.
The consistent thing is a general overall weakening of brain-body messages on the right side, meaning that each day I have less mobility and balance. Up to this point this month, I haven't had a fall, mainly because we've done more and more to reduce risk. That makes a vast difference.
Showers [ie, mine!] are more and more of an effort for Tracey. I am sitting to have showers. All in all we are constantly adapting as we encounter new difficulties. Heel pressure has to be watched constantly. I need more help in getting settled for sleep; turning me on my side [most of which I can do using the 'gallows' and raising and lowering the bed or portions of it], getting the right leg and foot into position – the host of things we do when our bodies function normally without giving them a thought.
Thursday, 23 May, 2013. 6:45 PM.
Time has slipped by this week so quickly. I've not much to report. Every day I am having a seizure at virtually the same time – 6.30 PM – but they are not serious. I had tonight's right on schedule. Sometimes I have two, but the second one isn't very strong. Still, it is an indicator of a weakening effect on my whole system, and that process of steady decline continues. My guess is that the Avastin is doing its bit to hold the tumour at this level now it's been in my system for 3 days. I suspect that without it, it would soon become uncontrollable, but we'll only know that when it comes to the time.
I did have one incident – which turned out to be something of a false alarm – when I was awoken after sleeping in this chair by a coughing fit in which fluid was coming up from my lungs. It was after one freezing night and the room temperature in the bedroom had been very low. I feared a touch of pneumonia, but the wheezing stopped immediately and my lungs felt perfectly clear from then on and have remained so.
Since then we have put a heater in the bedroom but we've had warmer nights with a bit of rain around. It was apparently harmless, but was quite a shock, as my lungs have been totally clear throughout this whole illness, and I think it is 8 years at least since I have had 'flu. Had this developed into something, it could quickly have become extremely serious, and I'm glad that we got the hit of Avastin before that happened.
Thus the knife-edge remains part of the game.
Monday, 20 May, 2013. 3:45 PM.
We're home again, glad to be in front of the warm fire as there's a nasty, sneaky westerly blowing and no warmth in the sun.
In spite of our best efforts, the protein level has gone up again, from being what we'd class as very high into the mid-level of the serious danger zone. I was hoping it would stabilise somewhere near what it was last time, but it's about 30% higher than that – but anyway, it's pumped in and now we see how we travel.
By the hospital scales I have lost more weight, though it's not visually apparent, due mainly to lost muscle. I have to work harder on keeping what declining muscle strength I have. The bedpole becomes my 'pull-up' fitness machine for upper body, and the walker is my stable knee-bends-and-flexing gadget for lower body. They aren't up to the task [or I'm not] but I believe they help to stem the tide a bit. I'm very wobbly on my feet, even with the walker, and take moving around with extreme caution. But it's important to keep doing so.
The very cold weather makes things harder to cope with, so I'm in the lounge with the fire a lot. Tracey is as usual working her butt off to make things as good as they can be for me.
The main question is what sort of seizures we might expect day to day this three-week cycle, and whether one will become serious enough to need hospital treatment. As long as they last not more than a few minutes and don't affect critical organs/spots too much, and if I have enough mobility/strength to do the necessary, then we can cope.
We have all the medical/official clearances necessary for appropriate levels of care, right to the highest. These are important matters to sign off on before an emergency happens, rather than after.
Comments [May-June 2013]:
Anonymous May 19, 2013 at 3:00 PM
Denis the connections I make will probably seem incomprehensible to you, but I was reading two articles the other day on the UK Telegraph. One was about the Dambusters incredible feat and the thing which I can still see clearly is the almost casual reporting that a couple of the bombers had to make nine passes at their heavily defended target before succeeding in releasing their bombs, just so. I am in awe of that.
And the other was some clever fellow in England copyrighting the phrase "Keep Calm; Carry On" which is one of the greatest (in my view anyway) exhortations of necessary pluck in the face of impending disaster.
Then you write the other day about the "you've had a couple of extra years - please don't say that", and I was wanting to write something then, but as you said, sometimes no words are best.
Now I'm sure others will find a better way of expressing their admiration of the fortitude you display, and their own feelings of anxiety as you approach each PTU test just to see if you will be given the Avastin - but all I can come up with is "keep calm; carry on".
kvd
Denis Wright May 22, 2013 at 9:24 AM
And very good advice it is. I think as we approach each test we have learned to deal simultaneously with two radically different outcomes.
So far we have managed one of these so many times that we may be blinding ourselves to the other. I suspect, for all the fine words, that will come as a shock when it arrives. Time will certainly tell.
DRKW May 21, 2013 at 1:06 AM
Thank you, my friend.
You have all the 'time' in the world.
http://www.phy.olemiss.edu/HEP/QuarkNet/time.html
Denis Wright May 22, 2013 at 9:15 AM
Just as long as I'm travelling a relatively long way away at a relatively high speed!
Ros May 24, 2013 at 6:12 AM
You are negotiating this knife edge, this precipice, with equanimity (from where I stand, anyway) with grace and with the fine tuning of an acrobat.
One day when it's my turn to be where you are, whenever that is, I hope I can remember how it is you are doing this thing, and achieve some small semblance of what I perceive of your acceptance and calm. I doubt it, but I can hope.
ReplyDelete
Replies
Denis Wright May 24, 2013 at 5:52 PM
Your analogy of an acrobat makes me smile, given my rather pathetic shuffling about with the walker and very severe foot drop but there's time to accept, not fight against demons that really don't exist. I try to save my energy for the ones that do.
And all that coping has everything to do with the carer, as you will know better than 90% of people in this country at least. Everything would fall apart for care-receivers without that support. The carer is saving the government[s] so much that they should be paid like an executive, not slung a few coins in the hat.
Delete
Reply
Anonymous May 24, 2013 at 7:58 AM
... careful
as someone crossing an iced-over stream.
Alert as a warrior in enemy territory.
Courteous as a guest.
Fluid as melting ice.
Shapable as a block of wood.
Receptive as a valley.
Clear as a glass of water.
~ Tao Te Ching (from Chapter 15)
Julie xx (This was on a friend's FB page this morning, thought of you )
Denis Wright May 24, 2013 at 5:32 PM
As you probably know, the Tao te Ching has been a guide to life for me for more than forty years. As with most texts, bits in isolation seem like platitudes, or so cryptic as to make little sense, but the beauty of it is that it's not dogma and its metaphors can be applied to any time and circumstances.
Of all inspiration it has been the one that has enabled me to grasp what's happened to me and the way to approach coping with it. That's why it's come up so often in my blog.
Its main message is to understand the nature of the thing you are dealing with as best you can and work with, not against, that which can lead to the best possible outcome.
That seems so obvious when it's written there, but we often end up beating our heads against a brick wall, which is hardly productive!
Anonymous May 26, 2013 at 10:04 AM
Oh yes, the brick wall. The ultimate obstacle, which you are feeling more each day that passes and which many of us can manage to ignore, pretend is not there. Well, we can only try, and if anyone has been able to follow taoist principles as best possible, it's you. I don't find segments of it to be platitudes, because each line, to me, is a story, complete in itself.
So you are still not having help with showers? That must be difficult for you both. As it all is.
Julie xx
Denis Wright June 1, 2013 at 10:31 PM
We are not quite at the point where outside help is needed. We know the point is coming when things will change, but we'll do things by ourselves until it comes. We've calculated this carefully, had all the discussions with the right people, seen and heard everything that's on offer in regard to care packages and equipment, so we know exactly where we stand. And sit! We are aware that things can change in seconds, and have that as much in hand as humanly possible.
Anonymous May 31, 2013 at 7:50 AM
Thank you for letting us know what is happening with you, even when it is such unhappy news. thinking of you. Hope you had a better sleep and the headache is gone,
Julie xx
Denis Wright June 1, 2013 at 10:36 PM
Thanks for your love and concern for us both, which you translate into action in wonderfully thoughtful ways. Day by day, but a quite steady couple of days lately!
Anonymous June 6, 2013 at 7:26 PM
I agree with Ros. I hope I can remember and take something from your example. As I lunched yesterday with Uni friends talking about saving the world as if we were still 17 and looking our 70 + s I though how quickly it all happens. Anne P
Ros June 10, 2013 at 1:54 PM
I'm thinking of you and Tracey, Den, and willing that all goes as well as can be possibly hoped for tomorrow. xx
ReplyDelete
Julie June 11, 2013 at 7:47 PM
Oh thank goodness:) Avastin going ahead.Have been watching all day to hear. What a lovely, mild day it was ,too, for mid June.
Julie M xx
Anonymous June 28, 2013 at 2:16 PM
Dear Denis,
I have read your blog and can relate to many things you are talking about.
My Dad was diagnosed with a GBM 4 in March of 2006 in the right temporal lobe and sadly passed away in December the same year.
Whilst life has dealt you a cruel set of cards - no doubt you are very lucky to have a supportive family. Cherish every moment with them as I am sure they do with you. I wish you the very best of luck throughout this journey and hope medical teams can one day cure this type of cancer.
xx
Denis Wright July 2, 2013 at 5:19 PM
That is very kind of you and I appreciate your warm wishes. I don't feel life has dealt me a cruel set of cards. On the contrary, taken as a whole I have been extraordinarily fortunate. It would be churlish of me not to acknowledge all the good things I've had. I'm sorry that your father's lifespan was so much shorter.
Yes, many types of tumours will be treatable in the future. A good deal depends on the tumour's location. That's beyond control.
Anonymous June 28, 2013 at 9:50 PM
Dear Denis,
My mother from quirindi nsw was diagnosed with GBM4 2006 and survived till August 2011, my dad, myself, my sister and 3brothers and partners all took care of mum at home over the 5yrs. You are an inspiration! To keep blogging when you are going through all of this is AMAZING! What a privilege to read your journey.
You keep POSITIVE, all the very best to you and your family!
Renee xx
Denis Wright July 2, 2013 at 4:57 PM
The thing I note especially in your comment is that you have had much help from a large and loving family in caring for your mother.
Sadly, not all have access to such wonderful help, and this is very hard on a carer who cannot be expected to provide 24 hour care for an unlimited time.
5 years is a considerable period of time for GBM4. My question would be about the quality of life for her in that time. I hope it was good.
Denis Wright June 30, 2013 at 3:42 PM
Thanks very much for comments. Though I haven't answered each one that deserved a response this time round, please be assured that I have read them carefully and have taken in what's been said. I hope to come back to several, even as a group.
Anonymous May 19, 2013 at 3:00 PM
Denis the connections I make will probably seem incomprehensible to you, but I was reading two articles the other day on the UK Telegraph. One was about the Dambusters incredible feat and the thing which I can still see clearly is the almost casual reporting that a couple of the bombers had to make nine passes at their heavily defended target before succeeding in releasing their bombs, just so. I am in awe of that.
And the other was some clever fellow in England copyrighting the phrase "Keep Calm; Carry On" which is one of the greatest (in my view anyway) exhortations of necessary pluck in the face of impending disaster.
Then you write the other day about the "you've had a couple of extra years - please don't say that", and I was wanting to write something then, but as you said, sometimes no words are best.
Now I'm sure others will find a better way of expressing their admiration of the fortitude you display, and their own feelings of anxiety as you approach each PTU test just to see if you will be given the Avastin - but all I can come up with is "keep calm; carry on".
kvd
Denis Wright May 22, 2013 at 9:24 AM
And very good advice it is. I think as we approach each test we have learned to deal simultaneously with two radically different outcomes.
So far we have managed one of these so many times that we may be blinding ourselves to the other. I suspect, for all the fine words, that will come as a shock when it arrives. Time will certainly tell.
Delete
Reply
DRKW May 21, 2013 at 1:06 AM
Thank you, my friend.
You have all the 'time' in the world.
http://www.phy.olemiss.edu/HEP/QuarkNet/time.html
Denis Wright May 22, 2013 at 9:15 AM
Just as long as I'm travelling a relatively long way away at a relatively high speed!
Ros May 24, 2013 at 6:12 AM
You are negotiating this knife edge, this precipice, with equanimity (from where I stand, anyway) with grace and with the fine tuning of an acrobat.
One day when it's my turn to be where you are, whenever that is, I hope I can remember how it is you are doing this thing, and achieve some small semblance of what I perceive of your acceptance and calm. I doubt it, but I can hope.
Denis Wright May 24, 2013 at 5:52 PM
Your analogy of an acrobat makes me smile, given my rather pathetic shuffling about with the walker and very severe foot drop but there's time to accept, not fight against demons that really don't exist. I try to save my energy for the ones that do.
And all that coping has everything to do with the carer, as you will know better than 90% of people in this country at least. Everything would fall apart for care-receivers without that support. The carer is saving the government[s] so much that they should be paid like an executive, not slung a few coins in the hat.
Anonymous May 24, 2013 at 7:58 AM
... careful
as someone crossing an iced-over stream.
Alert as a warrior in enemy territory.
Courteous as a guest.
Fluid as melting ice.
Shapable as a block of wood.
Receptive as a valley.
Clear as a glass of water.
~ Tao Te Ching (from Chapter 15)
Julie xx (This was on a friend's FB page this morning, thought of you )
Denis Wright May 24, 2013 at 5:32 PM
As you probably know, the Tao te Ching has been a guide to life for me for more than forty years. As with most texts, bits in isolation seem like platitudes, or so cryptic as to make little sense, but the beauty of it is that it's not dogma and its metaphors can be applied to any time and circumstances.
Of all inspiration it has been the one that has enabled me to grasp what's happened to me and the way to approach coping with it. That's why it's come up so often in my blog.
Its main message is to understand the nature of the thing you are dealing with as best you can and work with, not against, that which can lead to the best possible outcome.
That seems so obvious when it's written there, but we often end up beating our heads against a brick wall, which is hardly productive!
Anonymous May 26, 2013 at 10:04 AM
Oh yes, the brick wall. The ultimate obstacle, which you are feeling more each day that passes and which many of us can manage to ignore, pretend is not there. Well, we can only try, and if anyone has been able to follow taoist principles as best possible, it's you. I don't find segments of it to be platitudes, because each line, to me, is a story, complete in itself.
So you are still not having help with showers? That must be difficult for you both. As it all is.
Julie xx
Denis Wright June 1, 2013 at 10:31 PM
We are not quite at the point where outside help is needed. We know the point is coming when things will change, but we'll do things by ourselves until it comes. We've calculated this carefully, had all the discussions with the right people, seen and heard everything that's on offer in regard to care packages and equipment, so we know exactly where we stand. And sit! We are aware that things can change in seconds, and have that as much in hand as humanly possible.
Delete
Reply
Anonymous May 31, 2013 at 7:50 AM
Thank you for letting us know what is happening with you, even when it is such unhappy news. thinking of you. Hope you had a better sleep and the headache is gone,
Julie xx
Denis Wright June 1, 2013 at 10:36 PM
Thanks for your love and concern for us both, which you translate into action in wonderfully thoughtful ways. Day by day, but a quite steady couple of days lately!
Sunday, 19 May, 2013. 9:40 AM.
Weekly roundup. I suppose I could detail the frustrations of the care-receiver for the week, but it wouldn't serve much purpose. These are common to all who find the simplest of tasks now a major operation or impossible, but have no wish to call in the care-giver, who may be trying hard to get a little peaceful sleep at 6.30 am. It gets increasingly like that as yet another function goes. So that's all I'll say about that.
I've had a few minor "normal" seizures for the week, and one disquieting one of a different type. I'd had the feeling of a throat obstruction for a few minutes, or how you feel when you're suddenly aware you're in for a serious throat infection. I began to cough and then felt the "iron-band" effect on the right arm muscles for a minute or two, and then it was all overtaken by a constriction of the throat muscles. Although it seemed like all muscles for the throat were involved, I imagine it was really only half of them – on the right side. This made it almost impossible to speak.
Clearly this area is the next under constant attack.
I realise now that a creeping paralysis is occurring. The toes in the right foot became unresponsive, then the ankle, then the knee joint. The thigh joint is still functioning but responding less. I am trying to counter that by moving all joints as much as possible, but it becomes more and more difficult.
Avastin is scheduled for tomorrow. As usual, we play the wait-and-see game following the PTU test at the end of last week to find out whether it can be administered.
Thursday, 16 May, 2013 12:30 PM.
The PTU sampling has begun and won't end till 7 am tomorrow.
Lying on my back for longer periods, I now have to be careful about my heels, which develop redness and soreness quickly. What's needed are the pressure changes that come naturally with walking and moving around and, of course, cream applied at least twice a day, and keeping the heels free of constant pressure.
This is something that must be prevented rather than tackled after a real problem develops, as it is extremely hard to deal with after the damage is done. Therefore I must exercise to the limits possible just to create pressure changes on the soles of the feet, apart from the other benefits of exercise.
I have been free of major seizures for most of the week and am hoping that continues as long as possible; at least until the scheduled Avastin on Monday.
Once again this shows how impossible it is to see patterns in the three week cycle. Obviously all that matters is when the tumour decides to become active, and we have no seismograph for predictions, unlike with earthquakes. It seems that that's at least once in the three week cycle, but when is anyone's bet.
I become increasingly irritated with my growing lack of ability to do things for myself. I won't detail the little things that we all do without thinking about it under normal circumstances. There is no defence against this; I just try to do them myself, and usually succeed but only after intense effort and come out of the bedroom looking like thunder – poor Tracey wonders what the hell she might have done to deserve such a look.
All she's done is not be able to do the impossible – cure the ailment. What a crime!
Sunday, 12 May 2013. 9:55 AM.
It was a week that had its highs and lows, with a down phase towards the end of the week, but seems to have plateau-ed out. Although the night was disturbed, it wasn't because of seizures; just restlessness. I wrote a blog posting draft that will come to light by and by. In the fullness of time and all that. Not enough sleep has left me with foggy head syndrome, so I might be spending some time today catching up.
Saturday, 11 May 2013. 10.05 AM.
Yesterday was not a good day. I had a succession of seizures, one strong one and the others 'routine' in strength and length of time, every couple of hours up until 6.30 pm. Being at the limit of the current anti-seizure meds, I cannot do more with them.
We got a prescription for Gabapentin, and I used one of those last night for the first time. If you click on the link on the name of the drug above, you will understand why we are reluctant. They are to be used three times daily.
I tried the first one last night. I have not had a seizure since, but we are suspending use of it without taking a second. Its main effect was to make a fog descend on my brain as the evening progressed. I slept heavily and, Tracey tells me and I don't doubt because of the Sahara Desert in my mouth and nasal passages when I woke, I snored like a steam engine all night.
I can't remember when I had my last hangover, but I think it was the morning of the day after my 40th birthday, a day in which, at about 2 am, I was seen to be striding purposefully with a bottle of champagne away from the giant bonfire we had built for the occasion in the direction of what I believed to be my house, but was actually in the opposite direction towards the dam. I was gently steered to bed, where I probably snored just as impressively as I did last night. The hangover was both unpleasant and salutary.
I felt somewhat like that this morning, and when I tried to walk, it was more difficult that usual. As I've said before, after any seizure I am weakened physically, but after a first-time experience of a long succession of them, the suddenness and extent of the weakening is hard to come to terms with.
The hangover effect, however unpleasant, is not the primary reason why we're suspending Gabapentin. It has a corrosive effect on the kidneys [and other organs], and I'm due for a proteinuria test on Thursday. I believe it could affect the result badly, and I do want this shot of Avastin on 20 May.
It is also possible that the seizures may have stopped without it, as they usually do for a day or two anyway. But the succession of them yesterday was so unusual that we had to try something to rein them in.
I am prepared to put up with seizures, if they are no worse than they were yesterday, at least until after next Friday when the 24 hour urine test is completed.
So we make our decisions. We don't look backwards. It's been that way from the start. We learn from experiences, but we have no time for what-ifs and if-onlys.
Thursday 9 May 2013. 10:00 AM.
I had the first seizure of this 3-week cycle [6.00 am] following the one just after Avastin was given last Monday week. It was not too strong and appeared limited to right arm. It left me feeling very washed out, which is 'normal'.
That appears to be the most regular sort of pattern now. A strong seizure just after infusion, followed by a period of grace of up to 10 days, and then until the next infusion, an almost daily seizure of varying strength. There is usually one serious one, maybe two, and several 'post-quake' tremors. If so, I can expect more in the next days till next treatment on Monday, 20 May. The best we can hope is that they are not too severe, because each certainly damages limb response.
I hope we can keep the protein level down for the next 24 hour test starting a week today.
Thus is my life governed by 3 week cycles. I'm feeling I can identify with being a woman in that sense – but on steroids. Hang on – I am on steroids!
No major dramas, we hope, and no falling over....
Wednesday 8 May 2013. 11.55 AM.
Alice and Sylvia are boarding the flight to Sydney on their way back to Melbourne. It's been a good time and a special one. At the rate my leg strength is declining I very much doubt I will be mobile for much longer, so it was the right time. Is spite of my efforts to keep their strength, the power to summon up that strength is disappearing. I tell the toes on the right foot to lift, as the left ones do, but there is no response. I cannot trust the right knee. This is not a matter of physiotherapy; I wish it were.
It becomes increasingly difficult to turn over in bed, though the bedpole over the bed is my saviour.
As you can imagine, mobility is very important to me. Losing it changes the entire ball game.
I have had no more seizures since the one on the night after getting Avastin more than a week ago. I put this down to upping the Keppra dose and not doing something like falling over. Nor have I had headaches. But I am sleeping more, and heavier, or so it seems, and I find less and less time to do the things I want to.
Apart from the litany of complaints above, I am relatively comfortable.
Sunday, 5 May, 2013.
A very brief roundup today as Alice and Sylvia are here and we're making the most of the time. Things are pretty much as I reported on Thursday. All quiet on the seizure front. Ankles remain un-swollen. The only negative thing is the continuing decline in functioning of the right leg. This makes it harder and slower for me to get about, and I need to concentrate on each movement. Strength in my arms remains. I really need that as the legs weaken. Oh – more red spots are breaking out which is usual a week after Avastin.
Comments:
Denis Wright May 9, 2013 at 11:11 AM
On people with infections blundering into the house, I know it's hard for us whose life is threatened seriously by infection – and their carers – to understand the cavalier attitude of some visitors.
And yet I do understand it, because I was one of them, six years ago, visiting my youngest sister in hospital near the end phase of cancer. I rushed in to hug her. It was only the intercession of her loving carer, her husband John, who stopped me before I could do that, and made me go through a minor and simple decontamination process before any physical contact.
I had flown down to Melbourne, which meant long periods in aircraft and airports, in contact with all matter of viruses; no doubt some newly imported from overseas, but was oblivious to it all, and what it means to a person whose immune system is at zero. I could even be already infected with something newly developing that I could pass on to my desperately ill sister, or to her husband John, and to pass it on to the carer is as dangerous as passing it to the ill person. The carer will be handling all manner of things to do with the patient over time.
So even if we have no concern for the carer's well-being, infecting them is as serious for the patient as direct contact with the patient.
Ros's comment illustrates this perfectly. I was guilty of this ignorance in the case of my sister, but to think I might have thoughtlessly hastened her death with a vicious infection is not something I would want on my conscience.
Well-meaning ignorance is as deadly as malice; in some cases, more so, because of the strain it places on the carer.
Anonymous May 9, 2013 at 8:44 PM
Tricky. It means no visitors at all, and surely even medical visitors can pass on viruses unknowingly, or the carer when they go shopping etc. You've done well though -NO flus or anything like that the whole time you've been dealing with this!
Speaking of carers, I know I have not been one in the important way that other people have, but we did have nurses coming in regularly to give mum showers and to give me respite time, so I could go home occasionally (and visit my cat:)) or just go to town for a while. Don't you have that set up?
Julie M xx
Denis Wright May 11, 2013 at 11:38 AM
Yes, we have that under control. Our latest discussions with the relevant people were in a visit from them last Thursday. In the light of yesterday's events, it will be reviewed yet again. The assessor is coming at first opportunity.
I am very mindful of Tracey's welfare, as she is, because of its relevance to us both.
Ros May 11, 2013 at 2:38 PM
Reading carefully your present options, I reckon we would do what you're doing. Rock and a hard place - but sometimes the hard rock is a better place to be than the hard place.
Thinking of you both pretty much constantly.
xxRos
Denis Wright May 13, 2013 at 8:50 PM
Thanks, Ros. Right now it's rocks and hard places plural. It's weighing kidney against tumour control, new meds and seizure control, and they are all related. People have lots of good advice that would work for one isolated problem, but mine affect each other.
For example, turmeric often comes up as treatment for brain tumours, even GBM4s like mine, but there is a specific warning by Roche that turmeric must not be added to diet while on Avastin.
So we have to ride the horse we know.
Anonymous May 16, 2013 at 7:58 PM
You are very hard on yourself. Please be kinder to our dear Denis. I am so sorry that you feel such anger and frustration from not being able to do things for yourself.I am sad. I know about that, only briefly, from wishing I could at least stand up to sweep the floor, when I was having chemo. Looking at the leaves against the sky. It is a gracious person who can accept help, and I know you to be a gracious person, if a proudly independent one. There is no shame in needing assistance - ask any woman who has had a baby -forget pride and dignity! I think women have an advantage here (yay, one!)They have to get used to strangers (often men) digging around in their bodies, from quite a young age. It's all maya, anyway:) Remember? Now I want to go off and find a Rumi poem. This is exactly WHY these seers found such wise words: for this, for this.I am happy to hear from you.
Julie M xxx
Ros May 17, 2013 at 11:18 AM
Re: heels. I hope the parcel arrives today to assist in alleviating that issue. Xx
Thursday, 2 May 2013 11:16 AM.
How could I not post something cheery on my birthday? Fortunately, I can. I have been blessed by good wishes on the third birthday all the stats were telling us I wouldn't have.
I am feeling recharged by the Avastin – and maybe by the occasion. The skin that got peeled off about 10 days ago is healing beautifully. I am having fewer seizures with the increase in Keppra. I'm not having headaches right now.
Let's hope it continues.
Monday, 29 April, 2013. 3:40 PM. QUICK UPDATE.
Yes, we reversed the trend, would you believe. A week of very low protein diet before the PTU test and a combination of few other things that may have helped saw the reading actually come down rather than rise - to a level just above half that of protein excretion of three weeks ago] and almost down to that of the level of 25 Feb.
On that score, this is a good result. But sadly there are things we can't afford to lose sight of. Most importantly, this isn't an indication of 'curing' the kidney in any sense. I am having gnawing pain in the left kidney that is helped only by turning on my side in bed, and which has given me increasing discomfort over the past three week period. This dose of Avastin is likely to make it worse on present indications.
And as I began to type that last sentence, believe it or not, I got a seizure.
The frequency of the focal seizures continues to mount, although the extra Keppra seems to be limiting their effect, so we can only speculate on what would be the result of postponing or stopping Avastin altogether.
Finally, we need to bear in mind that this brings us down from a critically high result for the kidneys to a very high one.
I need to sleep now....
Sunday, 28 April, 2013 2:00 PM.
Sunday roundup time again, with no electric power as I write this on the iPad - which means no modem of course. And no coffee as the fire's not on today! A scheduled power break till 2 pm it seems.
I had two fairly small seizures last night; the first time since upping the Keppra anti-seizure dose earlier in the week. It's always disappointing because it means a significant feeling of muscle-power loss. Doing some muscle-strengthening exercises this morning made me feel body weight had doubled, which always creates mobility issues. Although my right leg had gone back to normal size, I'm having to move it in bed by raising and shifting it with the left foot.
I feel like the skin on my arm is starting to heal so can only hope that continues.
The palliative care nurses are bringing some more equipment today to see what will be most suitable. The major concern is to prepare for a time when I won't be able to get into the bathroom. These things have to be anticipated before we have a crisis on our hands, and not during or after. There are no easy solutions to some of these.
Tomorrow is the scheduled Avastin day. Many questions will be answered only after we get there. Tracey will ring them in advance to see whether there is any point in going to the considerable effort of getting me to the hospital.
Friday, 26 April, 2013. 10:45 AM.
The 24 hour urine test is with the pathology analysts and now we wait until Monday to see what happens. Much depends on the result, as I've already explained. There's no point thinking about it too much. Meanwhile, the place on the arm where I lost a patch of skin is taking its time to heal. We can only hope it does so without infection.
 |
| Source |
I have been having increasing trouble turning over in bed, and getting up, so a bed-pole that hangs a hand-hold over me has been added to the bed-bar by the side. [There's a story to how we acquired that, but another time.... Suffice it to say that an initiative on Tracey's part ended up with our getting a $200+ piece of equipment for nothing.] I am learning to drive it in combo with the bedbar, and as long as I grab it with the right arm before a right-arm tremor, I can use it with good effect.
Much depends on the level of seizure activity for mobility of any sort. The increased dosage of Keppra may be contributing to holding off any significant ones for three days.
In an effort to get the protein level down for the test I ate very little with protein in it for the week. An interesting side-effect of that was a reduction of fluid in the legs and ankles. At least that's the only obvious explanation. Lighter legs improve mobility a little, but the right leg remains unresponsive. Nothing dietary will fix that.
Tuesday, 23 April, 2013 2:00 PM.
We're just back from the oncologist. In some ways there's not a lot to say because we know that the next proteinurea reading is [again!] critical. We do know that he is keen to keep the Avastin going for as long as possible rather than try to hold back because of high proteinurea readings. We know we're likely to reach a point anyway with the next one [this week's] where he'll have no choice but to suspend the infusion. Whether that means postponement or halting permanently we can't say. Nor can he at this point, as it depends on how things progress in the meantime.
That's the big question. Yesterday I had three strong seizures, and I guess they've been averaging one a day up to now since the beginning of April. The last one round 6.30 pm was the strongest and longest I've had for years, and was completely down the right side, including the face. This left me incapable of saying words that made sense although I knew what I wanted to say. That improved after about 15 minutes and although slurring has occurred before, has never been as bad as that. The spasms down the right side have left me with sore muscles and less responsiveness.
The worry is not knowing how strong seizures will get nor whether they'll stop after some time. I was having aftershocks for nearly an hour after the main one last night. Their suddenness also means even less safety walking, and in the bathroom, especially if a violent seizure like that happens if I'm on my feet.
N*** has increased the second anti-seizure treatment we use from 3/4 of the maximum to the absolute max.This may dampen things down. I sure hope so. If not, there are others we can try if there's any point.
We are having to reconsider safety arrangements, not that we haven't been making adjustments all along. The relevant advisors will be coming soon to see what changes need making and additions that will help. We have that under way.
Sorry there's no real clarity. I trust N*** and know he'll recommend the course of action that has the best chance of prolonging an acceptable quality of life.
Serious times, but, somewhat surprisingly, my head seems relatively clear. [That is, I have had few bad headaches.]
Monday, 22 April, 2013 10:06 AM.
Family health status report: Tracey is merely saying "OK" with that brave look on her face when I ask how she is, which indicates she's breathing but not OK at all. Christian is out camping so I wouldn't know, but he makes more preparations for these things than Burke and Wills [better, I hope, as they didn't get back!]
I think I've come out of this fairly lightly so far. The magic wound-healing patch appears to be doing its thing and the rightside bruising doesn't feel too bad. I haven't looked yet. I'm annoyed that there's a dull ache in the leftside kidney area.
Oncologist visit tomorrow. That's going to be interesting.
COMMENTS:
Ros April 23, 2013 at 4:13 PM
That your "head is surprisingly clear" is the mysterious, magical, marvellous aspect of these "serious", and worst of times.
It reminds me of the time, almost 16 years ago, when Dave had an MRI update. When Dave's Neurologist at the Royal Melbourne Hospital declared that there were "no new MS lesions" in his brain, we all drew a collective sigh of relief. It seemed, and still does all these years later, that all the damage caused by demyelination is in Dave's spine - hence all the disabilities he has from the waist down.
BUT...and this is the point to this story...the good Professor gave me a great gift when he said, peering at the MRI scans, "If I had MS, I'd MUCH prefer to lose the function of my body below the waist, than lose my cognition. We don't live in our legs. Our personalities, who we are, lives in our brain."
We are so lucky.
I'm inordinately happy for all of us to have your brain still with us. Legs can be substituted. Harder to do that with our brains.
xxR
Denis Wright April 23, 2013 at 7:10 PM
Thanks, Ros and I see the point you're making. Perhaps I may have confused you when I said my head is surprisingly clear, where I meant only that I am not getting the number of headaches I might have expected. Not yet anyway.
When I get a seizure and the motor centre neurones and connections are destroyed, damaged or disrupted, the effect for the moment in my right side is similar to what Dave's experiencing in his lower body. The difference with Dave's MS and my brain tumour is that it's all in the brain for me.
But the process will inevitably spread to other brain areas as evidenced by the fact that the speech area [among others] is now being attacked. The hard thing to cope with is that in a week [or less] a node may appear somewhere quite different, affecting rationality and personality eg, very strongly.
Maybe you mean that you're glad it's limited to where it is for the moment. So are we all, but I do worry a lot about just where the next place will be, and the effect that will have. This is why the Avastin, fighting a losing battle though it may be, is probably slowing down the tumour's progress and why we're trying to get the last possible benefit out of it before the bad outweighs the good.
Anonymous April 23, 2013 at 8:16 PM
I hope that wretched Brian surprises everyone by behaving better. Very good wishes. Be careful. Good wishes to Tracey too. Anne P
DRKW April 23, 2013 at 10:45 PM
"It is hard to fight an enemy who has outposts in your head."
Sally Kempton
Persevere...
Thank you, my friend.
Denis Wright April 28, 2013 at 2:34 PM
Last week Ros asked about reactions to this year's flu injection and I missed it. The only reaction I had was a damn sore arm around the injection area.
Mostly I have had no reaction of this sort. This time I wasn't ready for the injection just at that moment, having just woken from sleep, and I have a theory that when I relax the arm totally, I don't get a painful reaction. That seems to be the case with Clexane shots. Maybe some are painful and not others for unexplained reasons, but it's a piddling price to pay.
As to flu shots, you're mad if you don't. This time, the protection rate is only 75%, according to the GP, but 75% cover is much better than none.
If you can't be bothered doing it for your own sake, remember you could be responsible for passing it on to a vulnerable person with MS or doing chemo or lowered resistance, or someone aged but otherwise healthy, so please do it for them at least. Every person who has a flu shot reduces the risk of community infection.
Tracey April 29, 2013 at 12:27 PM
Or to a Carer!
Ros April 29, 2013 at 7:05 PM
I'm glad you had no adverse reaction to your flu vax.
Anti-vaxers drive me more wild than any other other lobby group - except perhaps anti-gay marriage, anti asylum-seekers, anti-social justice groups etc etc. Hmmm - perhaps there's a lot that upsets me!
So, yes, Tracey. "Or to a Carer", indeed! An old friend of Dave's visited on Saturday. He hugged me - and Dave - and gave me a kiss on the cheek.
Because his wife of 40 years died last year just 2 months after being diagnosed with a brain tumour, I asked him how he was doing. I was really wondering how he was managing without his best friend. But no. He mentioned nothing of his wife but proceeded to inform us that he had a bad cold!!! For heaven's sake! Please don't HUG or KISS me or David. And for pity sake, tell us BEFORE you come into the house that you are harbouring an infection!
Den, I know your current report is a mixed blessing, but....it's something at least. Cold comfort. But an unexpected smidgen of not-all-bad-news. xxR
Bob Lake April 29, 2013 at 10:41 PM
Thank you for keeping us informed Denis - I don't know how you do it. When waiting for your results I visit What's New frequently but have been out this evening and just returned. As you say, a little - but very little - comfort from the lower protein reading, but this is offset by the kidney pain, seizures and apprehension over the effects of the latest Avastin. Talk about a rock and a hard place. I see it is your birthday on Thursday but not much to celebrate other than that, against all odds and predictions, you have made it this far. Anyway, best wishes for your birthday; I am sure that you and Tracey will be able to find a way to lift this day and make it special. Love to you both.
Ros May 2, 2013 at 8:49 PM
Happy birthday - again! And again!
So glad to read today's report. xx
Sunday, 21 April, 2013 12:05 PM.
I thought I was being careful, but not careful enough. We had a 'situation' in the bathroom last night that led to my being on the floor, blood down the bathroom sink cabinet, bruising down the right side, and back damage for Tracey.
I think the patch of ripped off skin etc are the least of my worries. Firstly, I was more concerned about Tracey's back than the bruises. This is exactly the sort of thing I've been posting about.
I'm also concerned that these incidents always affect my kidney function, and the urine test begins Thursday. Here we are trying to get the best possible result at the most critical time ever.
My problem with balance is that I'm relying on each 'yesterday' feel of the right leg; yet it's deteriorating overnight with each seizure and my judgment fails to adjust in time.
It could have been worse.
Saturday, 20 April, 2013 11:00 AM.
My faithful old MacPro computer is not well. This means using the laptop, and I am doing all my writing without the assistance of shortcutting techniques and graphics tools I'm used to having, so I'll be minimalist till I know what the score is for my workhorse computer companion of six years.
The last half of the week reflects the first; namely, that I am now having almost daily seizures at almost the same time each day - round 6:30 pm. This coincides with waking and physical activity after doing so. They are not large while happening, but in effect signify the weakening of the neural links each time to body, inexorably bringing mobility to a lower level.
There's nothing that can be done about this medically. Even higher levels of anti-seizure meds will simply dampen inflammation of the brain but do nothing to deal with the cause.
Wednesday, 17 April 2013 10:09 AM.
Apart from a seizure last night [6.30 pm] things have been on a reasonably even keel, though one odd thing happened. It was drizzling rain and very dark. I woke after sleeping heavily to hear voices, quite loudly – Tracey and someone I thought was Christian – and believed it to be about 4 am.
Unusual, I thought, so I turned on the lamp. Then Tracey opened the bedroom door and said "B**** is here and he's going to stab you."
No, I wasn't dreaming. The B**** I thought of was my mate from out of town, so this was a bit of a surprise.
Then I realised the person right behind her was B****, my doctor [not from out of town!] and it was 6.30 pm, not 4 am. This, I should add, was just after my seizure, so I was a little disorientated.
B**** had come to give me my flu injection, which he promptly did.
Who says life's not interesting? How often do you get woken by something like that?
Sunday, 14 April 2013 6:26 AM.
An early start for the weekly roundup, but I was up anyway. The week was one of increased seizure activity; almost daily now. In other respects, not much to report except for declining strength. I've taken to manipulating upwards the toes of the right foot to stop them, especially the big toe, from curling under. This can be quite a problem when putting on shoes, but manually bending them upwards seems to work well. I have no ability to raise the toes by brain command, no matter how hard I try. This makes it more difficult to walk, but I'm still managing to do so, if I take my time. I don't seem to have had headaches.
Now the internet connection has gone. We've had increasing problems with that too. 6.42 AM.
11:12 AM. After going back to bed and sleeping, all net problems are resolved. I better post this!
Comments:
Ros April 14, 2013 at 10:11 AM
Your mapping of your experience is so thorough, so precise, I can't help but wonder if it can be used in serious research into GBM(4)?
xxR
Denis Wright April 14, 2013 at 11:40 AM
Thanks for the good wishes above. This time round, I've left two weeks' worth up there rather than fiddle with transferring just one to the 2013 archive. The Law of Diminishing Returns sets in.
As to your question, Ros, it may be helpful, but what I have learnt from others with this condition ["blight" would be a better word, but one's not allowed to look negative, is one?] is that each case differs.
There's little better demonstration of that than Stephanie's father's case mentioned above and mine, where our decisions as to action in many cases differed quite radically for a variety of reasons I won't go into here.
But each in its own way would help people researching the more general circumstances I am sure. How much contribution to the actual pathology of GBMs is an open question. Only the researchers know what they are looking for amongst what some might see as the dross of irrelevant comment. Others may be more interested in what seems irrelevant!
By the way, if I choose to be negative, I will! It's part of it all, that's for sure.
Eerie experience you had with your Dr arriving AT THAT TIME OF THE MORNING!! Three questions:
A) Were you expecting him? More to the point, was Tracey expecting him? There's no way I'd be up, showered, breakfasted and dressed to receive someone at that early hour! And
B)How does one get a GP to do a home visit in this day and age? Let's clone him!
C) Did you have any reaction to the flu vaccination? I've been having them for 15 years (I'm a devotee of immunisation) and it's the first time I've felt a bit poorly afterwards. xx
Tracey April 18, 2013 at 9:39 AM
Hi Ros. It really was about 5.45PM :-)
Yes, we were absolutely expecting him.
Yes, he is one of a kind.
No reaction.
xx
Denis Wright April 18, 2013 at 10:06 AM
Ros: like Frank Spencer in Some Mothers Do Have 'Em, I was confused. :)
Bob Lake April 21, 2013 at 5:38 PM
That fall sounds dreadful Denis; we can only hope that you overcome this setback once again and retain an acceptable quality of life. And poor Tracey, the last time we visited you, she was having bad back spell - and you were in better shape yourself then. Christian - who we met briefly - appears to have provided wonderful support. A remarkable young bloke - give him our regards too. Not much else we can say except that we are thinking of you and hoping for 'whatever is the achievable best' for you. Love to you all. Bob.
Denis Wright April 22, 2013 at 10:05 AM
Thanks, Bob. I'll put up another status report shortly.
pegsiskatzencats April 21, 2013 at 5:54 PM
I'm sorry to read of the latest fall. :-( I hope Tracey is feeling better - and you too, of course! As always, I'm glad to see that humor intact. XXXOOO Pegs. :-)
Denis Wright April 22, 2013 at 10:03 AM
It's about the only thing that is intact, Pegs - though I have to admit, it's taken a bit of a beating as well.
Friday, 12 April 2013 10:36 AM.
I had a series of small seizures as I was going to sleep last night. I think each time I was dropping off to sleep it would trigger something. I can't say how many, but as you can imagine, to have it happen just as you're trying to sleep is not great for rest. I'm guessing it went on for an hour; maybe 90 mins. Ballpark figure.
It also makes decisions to go to the bathroom serious ones. A seizure at the wrong time in the bathroom is no fun, as we've seen from the disaster on 31 May last year. Yes, it's that long. But I felt strong enough [and was acutely aware] that all was OK to feel safe.
Oddly enough after episodes like this [I've had similar ones before but not so intermittently continual] I feel as if something's released. It's a post-earthquake sort of thing, where things seem more settled – but you can never be certain when the next is coming. An internal seismograph would be handy. The only clue I have is that the right hand feels hot before a seizure and is often swollen. By the time I feel that clamping of all the arm and hand muscles it's practically under way.
Thursday, 11 April 2013 12:45 PM.
I was woken by another seizure this morning, at 7.30 am. It was similar to the one last night but creeping more and more into the right-side face area and attacking the kidney last thing each time. It's left me with a low-level headache but otherwise I'm OK.
The right leg is very unresponsive. I tried hard to raise the toes of my foot, but they just sat there. It's such a strange thing when you order your foot to do something and it's like it belongs to someone else. I guess nobody owns it now, but I'll do my best to look after it because it's still useful. As long as I can move it forward and take weight with my arms on the walker, I can get about – just enough.
Wednesday, 10 April 2013 7:20 PM.
A seizure tonight, waking me at 5.30 pm, after less than an hour's sleep. Medium strength. I decided just to read on the Kindle after that, but will try to go to bed earlier to reduce the risk of headache if possible. It's probably just the pattern. I seem to get quite a strong seizure or seizures and a headache a day or two after Avastin.
I noticed that the whole right leg was quite cold before I got up. The left was a normal warmth. The right did slowly resume a normal temperature with some activity.
I'll take it easy – not that I can do much else. Meanwhile I'll try to keep in my mind the things on top of my priority list.
Monday, 8 April 2013 4:17 PM.
The infusion is done, which is [probably] the good part. The bad is that the proteinuria reading climbed dramatically and it was only after consultation with the Oncologist in Sydney that the decision was made to go ahead. He realises that in the contest between kidney function and the brain tumour running wild, it's best to risk the kidneys. There's not much point in having functional kidneys if I have little or no control over brain function.
This time the rate of increase has more than doubled, which means the steepest climb ever. To slow that rate and remain on Avastin seem impossible.
Apparently, the kidneys are still functioning OK, but we know with kidneys that they often do right to the last minute, and then collapse completely.
What the oncologist is doing is to give me the best chance for some further limited quality of life by trying to restrict the tumour, even though daily my right leg and arm respond less to brain signals.
If we remained on half dose or worse, I'd be bedridden by now. Our experience with four half doses vividly demonstrated that it has to be all or nothing.
So, we see what is ahead day by day, hoping for not too many seizures and headaches, until the next episode in 3 weeks – unless other circumstances intervene.
Sunday 7 April 2013 3.00 PM.
D-Day is tomorrow, though I'm not sure what D stands for. I'll tell you after the scheduled Avastin in the afternoon. There's little to say until then. I had a minor seizure yesterday after waking from my afternoon sleep. I hadn't had one for 4 days, including the time the 24 hour test was done, so that was good. It was probably stress-related given what's ahead tomorrow.
I won't write more now as there's not much point. In many ways the week went as well as I could have hoped. Still, the general decline seems unstoppable so let's not kid ourselves.
Thursday, 4 April 2013 8:46 AM.
I've just begun the proteinuria test which will finish at 7 am tomorrow. Everything's been clear and calm for the last couple of days so I'm hoping that continues for the next 24 hours at least, because we've seen that stress doesn't do readings any good.
There's nothing major to report. Each day the right knee seems less functional and I have to be very careful with it. I keep doing whatever I can to make sure it doesn't lock up or collapse. All it needs is extra care when walking.
Monday, 1 April 2013 9:31 AM.
Sunday roundup on a Monday – the best I can do as an April Fool's Day joke, I'm afraid, though I caught Tracey nicely at 00:02 earlier today.
A mild to middling seizure ended the month, and 4 days on off/on [mostly on] headaches signalled not a great week. Fortunately, after a round of Panadols [by which I mean 2 every 4 hours for 12 hours] my head is clear this morning. I'm grateful for that.
But 14 seizures for the month of March is not a very good result. Most of them don't appear to have been especially strong, or long lasting, but the effect has been to make it harder and harder to get about. While I've felt almost nothing in the leg area, superficially that seems to be where most of the damage is. It's as if it wants to complete the number on the legs while reinforcing the lack of responsiveness in other areas on the right side, and getting well started on a few new areas. It seems worst in the right kidney area and leaves me feeling nauseous for a while. Could it be that the tumour is doing more damage to the ability of the kidney to work than the Avastin?
It's a moot point, because the Avastin will be stopped if the proteinuria test doesn't improve – and there's no reason to think it will. I'll be doing a new 24 hour test to hand in on Friday.
Comments:
Stephanie Lancaster March 20, 2013 at 11:22 PM
Hi, Denis! Just stumbled across your blog and am going to go back to the beginning to read it. I am an occupational therapist by trade and also have a personal interest in GBM based on my dad's diagnosis in October of 2010, and so I am very interested to read about your experiences. Your story is different from my dad's in many ways, as i have been blogging about (http://justmycurrentperspective.blogspot.com) since spring of 2011, but I think reading your words may shed some light on some of what my dad experienced, much of which I am of course not even aware even as one of his primary caregivers. I appreciate your willingness to share your story and wish you the best going forward!
Replies
Denis Wright March 21, 2013 at 12:21 PM
Thanks so much for commenting, Stephanie, and for your good wishes. I will come back to you after going through your blog in more detail. My first impression is that it is excellent.
I will be very interested to see how similar/different your Dad's journey is. If I start right now I won't get several other things important to me done. I shall return!
Reply
Stephanie Lancaster March 21, 2013 at 11:24 PM
Thanks, Denis! So far one big difference I can see is cognitive changes; I wish my dad had been able to write or even to fully understand and discuss his condition and his treatment as well as you are. But then again that''s an "at least," isn't it; if I'm going to cast out wishes, I should just go ahead and wish that GBM or cancer in general didn't exist ...
Looking forward to getting to know you blog-style!!
Replies
Denis Wright March 24, 2013 at 10:54 AM
Yes, there are some very big differences. I want to make a blog posting based on your blog, because it brings up some important issues. Don't go too far away!
Denis Wright March 24, 2013 at 12:18 PM
PS Stephanie – I meant to compliment you on the first-class organisation of your blog. Mine's a dog's breakfast, which I excuse as spontaneity. You have given me a clue on linking the story on 'then to now' into something more coherent than I've done so far. Thank you!
Reply
Denis Wright March 28, 2013 at 7:23 PM
Particularly for and about my replies to Stephanie on two older but very relevant postings, for which I thank her greatly.
Brain tumours and you
Loss and adaptation
Stephanie LancasterMarch 31, 2013 at 3:57 PM
Many thanks and much admiration to you, Denis! I am still reading along on your blog and am almost caught-up to real time! I am finding your writing to be consistently informative and enlightening.
Replies
Denis Wright April 1, 2013 at 10:23 AM
Mine's cluttered but as I said I've taken a few ideas in organisation from yours on board. Translating them to action is the real challenge!
Repeating the link for Stephanie's blog
Just My Current Perspective
Reply
Julie Lake April 3, 2013 at 9:49 AM
Have read The Bitter End postings and round-up with great interest. It makes me realise that those now, say, over 60 are the first couple of generations really to be able to make choices or have input into the way we die when facing our own imminent mortality. I'm trying to make up my mind whether this makes it easier or harder! As an Australian baby-boomer of basically English descent I have all my life known comfort and prosperity and security - and above all had the freedom to make my own choices. The only trouble is that I find it positively outrageous to think I'm actually going to DIE! To, one day, just not BE here. For all my glib talk about acceptance I don't really believe it, despite having gleefully written my own eulogy and chosen the music! No wonder we have become so coy about candidly discussing the subject - yet we are happy to discuss that other once-taboo subject, sex, in its most explicity detail! In my observation earlier generations and those peoples today still living in less materially-advantaged cultures are a lot more realistic about the obvious fact that "in the midst of life we are in death" than most of us in western society today. And I haven't observed that the religious actually cope with it any better than non-theists who, like me, think in terms of atoms and molecules. When we talk about the issues raised in "The Bitter End" perhaps we should also be talking about imbuing our society with a better acceptance that death - albeit (we hope) later rather than sooner - is part of the natural process. No need to be morbid about it - just an awareness, while we still live, that "golden lads and girls" all indeed must come to dust. Maybe, amongst other things, this would make it easier for those among us with terminal illnesses to discuss death more freely and without worrying about "upsetting" people.
Replies
Denis Wright April 3, 2013 at 7:29 PM
Yes Julie, death is inevitable, but like you only much younger, I couldn't imagine why the universe could possibly exist without me!
But experience of Asia and its philosophies has disabused me of that egotistical notion, and the experience of the past forty months or so certainly left me in no doubt. Until you can really attempt that you can't see the world as it is. If any of us reading this dies tomorrow, 99.9999% or so of the world's people will simply go on until it's their turn, coming ready or not.
Reply
Anonymous April 7, 2013 at 3:48 PM
Your mention of D-Day sent me back in time to my marriage, for which my RAN father in law to be provided a full daily ops, complete with H+- hours and minutes. It worked very well, as far as I can recall.
Then 32 years later his son (by then outranking his late father), my brother in law, produced the same sort of thing for my wife's funeral. It also worked very well, judging by reports although I recall little of it.
In military parlance 'D' stands for 'Day' - nothing more. D is a moveable, yet to be determined date, but will follow a plan - but I expect you know all that. But it gives me an excuse to say I hope you have a lovely stress-free Autumn Monday time tomorrow, as far as possible.
kvd
Replies
Denis Wright April 8, 2013 at 11:24 AM
No, I didn't know that about D Day – thanks. At one stage I had in mind to see what it meant but I forgot. I had no idea.
H Hour on D Day approaches. But H Hour is fixed, and has been for 3 weeks.
I have to say I'm averse to military management [which is fine for a wedding because of its predictability!] in how we've gone about my treatment. It presumes too much. Illness can be over-managed. Fortunately, mine hasn't been.
Reply
Ros April 7, 2013 at 4:18 PM
Whatever is the best that can be possibly hoped for tomorrow, I hope it for you. xxR
Replies
Denis Wright April 8, 2013 at 11:25 AM
Thanks, Ros. You more than most people know the score.
Reply
Bob Lake April 8, 2013 at 5:37 PM
April 8th. Obviously not good news Denis and the fact that you have been expecting it does nothing to make it any better. You have been surprising us for more than three years now, and I think you are wise in your decision to try and maintain some quality of life. All I can say is that we are thinking of you. Love to you both. Bob.
Replies
Denis Wright April 8, 2013 at 7:23 PM
Better news than it might have been, Bob! These days a 'sort-of' extension of 3 weeks means a lot. Thanks for the good wishes.
Reply
Julie Lake April 8, 2013 at 9:05 PM
As Bob says (but I never CAN resist putting my oar in!), we are, as always, thinking of you. And you continue to amaze and entertain us.
Anonymous April 9, 2013 at 12:07 AM
And I will repeat what has already been said tonight, an inspiration. Anne P.
Joan April 9, 2013 at 9:22 AM
My heart was in my proverbial mouth when I logged onto your blog this morning, Denis. Given some of your earlier comments, I half expected to read that you discontinued the avastin in favour of your kidneys. It was beyond me to understand why that choice would have been made, but I trusted you to consider your options and choose the better one. I'm so pleased you and your oncologist came to that decision, as I do remember how quickly you declined when the avastin dose was halved. Choosing the brain over the kidneys seems the far better choice. Your kidneys cannot write this blog.
I'm glad to hear that your kidneys are still working okay despite the signs. Knowing you, I think you will be here for sometime yet, however diminished in mobility.
Given the circumstances, this is the best news I could have hoped for.
Ros April 11, 2013 at 3:53 PM
I want to say "tough pickings", but I'm mixing my metaphors there. Hope it helps you and Trace to know there are many earnest and loving souls out here metaphorically holding your (pl) hands. And sending all love to you both.
And to your toes and to your kidneys.
xxR
Anonymous April 11, 2013 at 8:40 PM
Yes. Well.Thank you for the updates, it matters.
Julie M xx
Saturday, 30 March 2013 9:56 AM.
In the past few days I've had a seizure and yesterday, a long, rather troublesome headache, which lifted last night. I just feel a bit tired now. I won't write more today but will do a weekly roundup tomorrow. I will probably rest again soon.
I hope all are having a pleasant break.
Tuesday, 26 March 2013 11:31 AM.
Calm and quiet; no real changes, which is how I like it. A set routine with not too much excitement seems to work best.
Sunday, 24 March 2013 10:15 AM.
My father's birthday. Had he been alive, he'd be 98.
Sunday roundup. Apart from the poor proteinuria reading, Avastin last Monday seems to have stabilised my system. Or something has. The biggest obvious problems remain with the right leg and balance. We hope the calm persists. The left arm muscles remain very slow to heal but I can move it more freely in several directions.
Friday, 22 March 2013 10:09 AM.
My sleeping patterns are changing bit by bit. I'm waking round 4.30 am, reading a little, and then going back to sleep at about 6.30 am and sleeping till about 9 am. Why don't I try going back to sleep immediately at 4.30 am? Because that's not a great time to be lying on my back wide awake. So I arrange several pillows and get my feet up as high as I can. It helps when I get up next. My right leg doesn't feel quite so full of fluid which makes it slightly easier to get about. Usually it's more like having a log rather than a leg. A heavy, rubbery log I can barely if at all raise off the floor.
Every step is now a process of extreme care, with a hand always near or on a secure hold. I could not walk across the room now without the walker, even though I stand by the bed and practise standing and balancing so I don't lose what facility I have. The walker is also my exercise machine, both for arms and legs.
You wouldn't know all this unless you were watching me get about, doing the simplest tasks. Yes, I could get Tracey or Christian to do nearly everything, but that only increases my feeling of growing near-total physical dependence. Speaking to Johnny on the phone last night, he said, "You sound great. Totally normal."
He's right. I do. I could fool anyone at the moment if they read my stuff, or can't see me, except for when a common word won't come or under stress. But I'm being hammered down daily, physically. The only thing holding that to its current rate is probably the Avastin. Certainly the seizure rate has gone down markedly since last Monday. The intensity of seizures is low. But headaches are increasing.
My right arm has healed, pretty much, and the left one with the muscular aches is very slowly improving.
I can't believe it's Friday again.
Monday, 18 March 2013 7:33 PM.
As I suspected, the news is not good. The proteinuria level has reached 1.06. We had hoped it would remain under 1.0.
When it reaches over 1.0 the ball game changes. The Oncology staff discussed it with my Oncologist by phone and he said – as we thought and hoped he would – to go ahead with the full dosage this time and see what happens.
The key is 'this time'. There's no point in speculating. It's not like this comes to any of us as a surprise.
Sunday, 17 March 2013 1:34 PM.
An increase in frequency of seizures for the week – smallish ones but widely spread on the right side. Ankles and feet swell badly so I've been having bed sessions keep them above heart level. This makes the fluid drain quite quickly from my feet so the skin wrinkles when fluid drains – usually wrinkles on the top of the feet, but ankles don't usually go down.
This morning, perversely, I thought the puffiness of the ankles had declined while the feet – both – were swollen. I must sit less at this computer and rest more, but sadly, sleeping doesn't do a thing for the swelling. As it's both feet, it's clearly a kidney problem and nothing to do with blockages, though sluggishness of brain response on the right side accentuates it there.
The proof will come tomorrow with the proteinuria reading – we hope, before Avastin infusion. I'm not expecting good news given right-side low level pain but hoping very much it's under 1.0.
I have an unusually large number of red spots appearing on the right arm. These usually appear soon after Avastin but are well on the way to fading by the next one. I'm not sure what this late appearance signifies. No-one has ever been able to explain these spots, but they are not from bumps with objects.
The right leg feels heavier and less responsive. I had one unpleasant headache [is there a pleasant one?] but it passed after 18 hours or so. My head is reasonably clear but I'll need to rest soon to keep the headaches away. Most of those problems come from overdoing it one way or the other – or stress from some surge of brain activity, or tension.
Comments 14-22 March
Anonymous March 19, 2013 at 12:49 AM
All my best wishes go with you for tomorrow Anne P
Joan March 19, 2013 at 11:34 AM
No, it's not a surprise, Denis, but one always hopes the day will still be far away. You have defied so many odds and probably broken some records. As I said the other day, despite your infirmities, you are still so healthy, with the exception of your kidney reading. Your good health will do its best for you in arriving at a manageable situation, if possible.
I imagine you have considered dialysis. If your mind is still good, you are not in pain, and your life is giving you pleasure and creativity despite your disabilities, then perhaps this option is feasible?
Tracey March 19, 2013 at 1:45 PM
Joan, you are not the first person to ask about dialysis.
People have very little understanding of the rigours on the body involved in dialysis. As a treatment, it is not ideal, but it is the best we have for people waiting for kidney transplant; people who are otherwise without any medical problems who expect to be able to live a good life if given that chance. There are many, many people in this situation, waiting for dialysis and transplant.
The person that I gave one of my kidneys to was relatively young and otherwise completely healthy, with a good life expectancy. In the work-up for that op and the many hours I spent in renal units it was very clear that it is not the easy, carefree process that people think, and has ramifications that most people cannot be expected to understand.
It is not an option for a palliative patient. Even if it were, it would take away whatever quality of life was left, in order to keep them alive for a little bit longer in order to shortly die of something else.
Denis Wright March 19, 2013 at 9:01 PM
Thanks, my darling – you've been busy while I've been asleep and saved me from writing a number of things you said – especially from the [rare] point of view of a kidney transplant donor. We have always been in complete agreement about how we approach this and that is the greatest blessing of all.
The only other thing I want to add is this – even if I had the [unlikely] opportunity to undergo the rigours of dialysis, the Avastin treatment would be suspended as a condition of starting it. No – call it like it is – stopped forever.
So, dialysis would mean that the very last control over the tumour that medical science now offers is gone. There are no others with the effectiveness of Avastin in terms of slowing it down – and certainly none in history able to control it with any appreciable effect in the timeframe we have.
So there you have it. This is why we can only wait till the next proteinuria test to see what happens. There is nothing else to be done.
I'll say again – we knew from the moment that we started with Avastin, the day would come, if I were not taken by something else, that Avastin would have to cease because of its side-effects. What no-one expected is that we'd have this long.
So we take whatever pleasure there is to be extracted from each day, and that demands no more additional stress than is necessary. Calm, peace and quiet are my best friends in terms of treatment.
Joan March 20, 2013 at 10:01 AM
I expected that dialysis had been discussed, but since that option had not been aired on the blog, I thought to ask. Thank you for the explanation.
In a way I am pleased you do not have to make such a decision, as I was very aware that prolonged suffering would be one effect should such a process been possible. Therefore, the decision has been made for you.
I am deeply sorry to have to acknowledge that no further medical treatment is available. Faith, hope, moments of illumination, joy, and love are your abundant and never-ending treatments now, and they will not fail you.
The Avastin has done an incredible job, and no doubt, encouraged by your experience, medical researchers will be developing accompanying treatments to allay the side-effects and gradually develop a treatment either to manage permanently or eliminate this type of cancer. You may have retired from History, but you'll go down in history. regardless.
Like politics in Australia, you are full of surprises, and I expect to be reading new entries on your blog for some time.
Denis Wright March 21, 2013 at 12:10 PM
Thanks for being one of the agents to stimulate me to respond, Joan. You're quite right that the decisions about treatment will be decided almost certainly by circumstances beyond our control.
You also give me the important opportunity to say another thing. When Avastin stops, it's probably not like the curtain's just going to drop. The future is as unpredictable as ever, but recent events in another case we have been following closely would indicate things may go on for quite some time.
The absolutely critical factor is quality of life. And that's all I will say on it because speculation really is useless – and maybe harmful.
Joan March 22, 2013 at 9:31 AM
I suspect you'll go on for quite some time, too. Your good health is an indication of how strong you still are. Your body is not about to give up just yet, and your mind is clear and sharp.
While speculation may not be profitable, we can hope. The doctors are good at speculating. They call this "prognosis" and often it involves pointing the bone and scaring the patient to death. I'm so thankful you did not fall for that.
I am hopeful for the future, however long it may be. I'm so glad there are positive indications that give some grounds for hope.
Much love to you, Tracey, and Christian.
Stephanie Lancaster March 20, 2013 at 11:22 PM
Hi, Denis! Just stumbled across your blog and am going to go back to the beginning to read it. I am an occupational therapist by trade and also have a personal interest in GBM based on my dad's diagnosis in October of 2010, and so I am very interested to read about your experiences. Your story is different from my dad's in many ways, as i have been blogging about (http://justmycurrentperspective.blogspot.com) since spring of 2011, but I think reading your words may shed some light on some of what my dad experienced, much of which I am of course not even aware even as one of his primary caregivers. I appreciate your willingness to share your story and wish you the best going forward!
Denis Wright March 21, 2013 at 12:21 PM
Thanks so much for commenting, Stephanie, and for your good wishes. I will come back to you after going through your blog in more detail. My first impression is that it is excellent.
I will be very interested to see how similar/different your Dad's journey is. If I start right now I won't get several other things important to me done. I shall return!
Wednesday, 13 March 2013 8:54 AM.
We gave the new wheelchair and ramp a run last night when I went to the last full dress rehearsal in its venue at the Town Hall for Farndale Ladies' MacBeth. Tracey was terrific and I'm not even prejudiced am I? The last-minute glitches are being ironed out very well and we've got a good show. It goes on on Thursday. The ramp is a triumph and apart from the inconvenience of getting in and out of the car, folding the wheelchair up and getting it out again, it's a smooth ride from porch to destination.
The arms are taking a long time to mend, especially the muscle-damaged left one, and it is still painful to perform simple functions like washing face and brushing hair. The new skin seems to be growing beautifully on the right arm with no sign of infection touch wood.
It's an irony that most of my grouches centre on the peripheral things. Maybe it's best that way.
Proteinuria test collecting starts tomorrow. This will be completed early Friday morning and analysed by the scheduled time for Avastin on Monday. I am expecting an increase in the count again but as to its extent – we'll see.
Comments:
Ros March 4, 2013 at 3:15 PM
Ow-Ouch! That's one hell of a technicolour bruise! xx
Denis Wright March 4, 2013 at 4:29 PM
It's just painted on the garner sympathy... [oh, if only.]
Julie Lake March 8, 2013 at 10:35 AM
Sorry Denis, meant to reply earlier but have been away in Brisbane for two days - I DID indeed see the ramp posting and pics. Sort of backs up what I just said about giving practical help in my posting on the "equine etc" blog/response page. Quite wonderful, those blokes! It was certainly needed, because I remember carefully shepherding Bob, who trips easily, down the steps and along that brick pathway. I rather liked the pic with the slippers but wonder how many people today will get the allusion!
Denis Wright March 10, 2013 at 6:35 PM
You mean there are people able to read blogs like this who've never heard of The Wizard of Oz? How can this be?
Ros March 9, 2013 at 4:56 PM
The bruising in your muscle must be very, very deep to be that painful for this long.
My terror is, always, that Dave falls and breaks a bone. As careful as we are with all transfers, he does fall - quite frequently, really. But so far, he has miraculously avoided any breaks. Having worked in a country town hospital I know only too well the likely outcome for a patient who breaks a leg/pelvis who is frail and/or aged and who has mobility issues. To reiterate Denis's words above - DON'T FALL!
NB: Statistically, you are more likely to fall in the bathroom than in any other room in the house. Don't be brave. Be sensible. (Not talking to you Denis - I know you are...sensible. I'm just talking to the universe.)
The MS Society (bless their hearts) helped with funds for this portable contraption which gets its fair share of use in our house: http://www.mtsmedicalsupply.com/ELK-Emergency-Lifting-Cushion/551/MPCA070600/
Denis Wright March 10, 2013 at 6:39 PM
"NB: Statistically, you are more likely to fall in the bathroom than in any other room in the house. Don't be brave. Be sensible. (Not talking to you Denis - I know you are...sensible. I'm just talking to the universe.)"
No, I am not sensible sometimes. I try to cling on to independence and pride, and you know what they say about pride.... See Sunday roundup and showering.
Delete
Reply
Anonymous March 17, 2013 at 7:37 PM
Reading Sunday's comment my spirit sinks. The kidneys, oh all of it, the swelling, the seizures -damn. You are a dear to keep writing those cheerful blogs that we love, but I suppose it helps you too be - cheerful!
It's St Patrick's Day and we have been to lunch with an Irishman, and finally walked away from my mother's house,an era finished. See you soon -I'll have more time now!
Julie M XX
Anonymous March 18, 2013 at 9:08 PM
Not much can be said about your post this evening Denis, other than to hope that you are comfortable, and continue as comfortable as possible.
kvd
Sunday, 10 March 2013 5:24 PM.
Those waiting in breathless anticipation[!] of the Sunday roundup have had to wait. By the time I got my other posting delivered it was afternoon sleep time.
It's been a week of tissue healing [and seizures, none too dramatic but way too many]. It seems to me that the way the left arm feels depends on the time of day; most discomfort early on and better as the day goes on. Overall I feel it's better. Perhaps the Hirudoid is helping, but it's a time thing. Patience and extreme care.
I've been standing in the shower but a bit of a slight overbalance last night which could have seen me on the floor convinced me that it's time for sitting on the stool to shower. As I said that to Tracey it was clear that was going to happen anyway, as she had witnessed the event and said, "You know if you fall over, I'm going to have to leave you right there and call the ambulance, don't you?" She was right. There's no way she and/or Christian could safely lift me from all our points of view. That's a result I surely don't want, and it can easily be avoided. We've got enough other things waiting to make life difficult without my inventing another one.
Saturday, 9 March 2013 10:57 AM.
A smallish seizure at 9.30 am today; again in the bathroom just after washing my hands. I'd been at 5.30 am with no problem and went back to sleep, but the physical activity does set it off. Different was that the seizure dropped away in the hand in the way usually signalling the end of a session, but this time shoulder and neck kept up the sensation of uncomfortable electrical activity like a layer of prickly stings and tightness all over. They weren't strong and died away eventually.
Somehow I prefer the clear final spasm that signals the end of a session, and let's me get on with recovering from the semi-paralysis. That takes 15 minutes or so for a minor seizure but leaves me that tiny bit weaker and more unstable overall.
Better news is that the "wound" [it seems melodramatic but can you suggest better?] continues to heal cleanly. I had no bandage cover over it last night – I think that's good for it but I really don't want to bump it and open it up freshly, so we'll put on a light dressing and bandage just to protect it from my clumsiness.
The left arm continues to be more troubling, especially biceps/triceps area. it makes exercise difficult. We are trying a product called Hirudoid [I know - it looks like a treatment for something else entirely!] but so far no magical effects. Maybe if I'd had it on for a fortnight... but I really imagined a couple of days would see the muscular pain go. Much too optimistic.
The worst problems I've experienced physically in these 3 years have both come from falls. There's a message there, people in delicate health or ageing. Don't!
Thursday, 7 March 2013 10:00 AM.
A lot of friends recommended Arnica for the bruising. For fading the surface discolouring it seems to help, but I've found its effect is more cosmetic than anything else. It seems the deep muscular discomfort [OK, pain] simply needs time. It makes typing difficult.
I had a small seizure at 6.30 am. Again this is just after sleep. Upper arm, neck, right kidney area and foot, but not much in the fingers.
[Correction to following sentence - wrong! I had a seizure on 5 March too.] I suppose I was due for something after 6 days. Let's hope it's all, but I feel tired already. My system is always teetering at the edge. I begin to understand why those with mental illness become irrational, the pressure stress of any sort puts on them, how much their mental and physical performance slows, and how that can easily spiral downwards when there's no letup. These two paragraphs took half an hour to write, and I feel like doing nothing but returning to bed. I will.
Monday, 4 March 2013 12:43 PM.
Yesterday's weekly roundup on a cold autumn day after yesterday's excitement. Christian says it's fine, there in his t-shirt and bare feet, but he spent the weekend doing a Wolfes Combative course,[no apostrophe so what – that's how he names his program and it's his right!] It's a certificate course which I think is superb in content, and Christian has the circulation of a hummingbird. His feet are warm, but mine are freezing again as I sit here too long. I must get up and move about.
I've had no more seizures since 1 March, but the effect of whatever caused them is trickling down. As I'm bound to a commitment to tell all, I have to say things are not so good. My sheer strength is declining and the problems with both arms are putting severe limits on exercising. I'm prepared to do what it takes, but the muscles of the left arm have copped a battering with the fall. The protective bandage on the right arm when doing exercise feels as it tightens over the muscles almost exactly like the beginning of a upper arm/neck seizure! That's disconcerting, but I've ignored it and so far so good.
More disconcerting are the legs; the right in particular, but both are weaker and the right much more so than last week. I will continue doing whatever exercises I can. I do fear losing balance in leg exercise where I'm standing and try to substitute other exercises, sitting or lying, but the decline is continuous. I also think occasional dizziness with standing/walking exercise has to be watched, and the other concerning possibility is a short blackout while on my feet.
Right. Enough whinging for now. Have a look at this compared with the bruises of 27 February. It's as painful for some things; e.g., lifting a cup to the lips as it was when I did it.
Sunday, 3 March 2013 10:43 AM.
Weekly roundup will come later in the day. I'm feeling a bit lousy [nausea and weakness] after a night's broken sleep. The muscle ache in the left arm has been relentless. I admit I didn't expect this.
Saturday, 2 March 2013 1:52 PM.
No more seizures since last reported yesterday. So far so good. I'm happy to have this as a boring post!
Friday, 1 March 2013 10:16 AM.
I'd been saying nothing about seizures in order not to invoke one, and that was working until 4:50 AM this morning in bed, just after I'd been up to go to the bathroom. It was mid strength and lasted about 3 minutes.
I went to bed and woke at about 9:50 AM. I trundled out to the kitchen and then realised that I was being grabbed by another one and could tell it was going to be strong, so managed to get to sitting at the table before full impact. It was the strongest since late last year – with tremors in the neck and face, as well as the rest of the upper torso and internally on the right side, with nausea. It's a tough one when I start breathing heavily like that.
So that honeymoon of no-seizure since 23 Feb is over and March has started with a double-bunger. Whoopie-do.
I notice that in nearly every case, seizure activity is happening after a period of sleep. Something about brain – and probably physical activity – seems a trigger. I suspect it builds and is there waiting to go off, and when there's conscious brain activity, the brain riot in the tumour-affected area explodes.
This is not going to get any better, obviously. I am more and more conscious that I can't afford to get hit by a seizure on my feet in no-man's-land, even with the walker. Turning it round to sit on it is a tricky operation when limbs are paralysing or going into a frenzy.
The area around the wound on the right arm is getting itchy, which I take to be a sign of healing. A good bandage is necessary so I don't do something to upset that progress by scratching it. The left arm deep bruising is bloody painful except for muscles that I use more often. All the more reason for people in similar circumstances to keep as fit as possible.
11:45 AM. Update – a third seizure. Not so strong. I think I may be in bed for much of this date. Rest, as Marg says [and she's seen plenty of Grand Mal seizures] is what you must do. Tracey, needless to say, is standing by, but really there's little she or anyone else can do while they're happening.]
Wednesday, 27 February 2013 2:50 PM.
I think the full Avastin has helped in allowing a tiny bit more mobility and balance. I just have to take it a bit easier as I can somehow 'feel' the contents of my brain.
The greatest inconvenience by far is the left arm. I know now why it has been so painful and limited in movement. [Note that this is as the caption says the inside area of the left arm – it looks here a bit like the outside of the right!]
 |
| Inside area of left arm. More bruising to come out. |
Tracey took off the dressing today of the wound on the outside of the right arm [below] and we did an inspection. We are pleased with it. It seems free of infection and areas are healing fairly well. Others newly re-exposed by replacing the dressing will benefit from the healing at the edges.
The nurse was able to cover part of the wound with torn-back skin, which explains those darker patches, and as long as it remains infection-free, will help. A new dressing is in place.
 |
| Outside right arm. Pretty neat and clean, if not pretty. |
Monday, 25 February 2013 4:31 PM.
We're back from the White Witches at Oncology and I'm about to rest. The proteinuria count was .78, continuing its rapid climb towards the 1.0 critical zone. This was after the return to a full Avastin hit three weeks ago, and the proteinuria test was taken in the same 24 hr period as I fell on the stairs.
It's not good but I doubt we can expect any slowing next time round after today's full Avastin dose. On the contrary, no matter what we do, it is bound to rise. The only question is the rate and the reading.
Quite a bit of bruising of the left arm is now coming out. I'm not surprised at the extent of it, because it was sorer this morning than it was yesterday. My rate of healing of that type has obviously slowed considerably as well.
Now to rest.
Anonymous February 22, 2013 at 10:11 PM
Really sorry to hear about the fall. Hope you feel more comfortable soon. Take care. Anne P
Anonymous February 24, 2013 at 10:34 AM
Yes,really horrible about this fall.*Insert curse words*. The muscle soreness must be a nuisance since it is your "good" arm, too. I trust that since you will both be keeping a close eye on the skin damage it WON'T become infected. At least it is better to be your arm, where circulation is greater and more blood vessels available, than the shin area, where ulcers commonly do occur. I realise you have complications with healing from everything else that is going on, specifically the medications. But you are both so vigilant that I feel comforted in my hopes that it may be an incident we'll be saying 'phew' about before too long. Fingers crossed.
Julie M xx
Replies
Denis Wright February 24, 2013 at 12:29 PM
I wanted to ask you Julie, because I know you had the same type of plaster for a not-too-dissimilar reason very recently, how often did you replace the dressing?
Anonymous February 24, 2013 at 1:11 PM
The dressing was replaced every second day at the wound clinic at Community Health for my leg ulcer, which was quite deep and was infected. It began when I scraped my shin in a fall, but I was busy and careless and didn't pay enough attention to it initially.Your injury may be quite different. Has your doctor seen it? Can he come to your house? I think the right treatment from the word go is essential. hugs and best wishes
Julie M
Denis Wright February 24, 2013 at 6:16 PM
Yes, my injury is different in that it was contained in a freshly washed long-sleeved top that wasn't holed in the accident. Of course when we got home we dealt with it immediately – gentle wash with warm water [which felt like fire being applied I must admit] and with the appropriate sterile dressing for the task.
You must have missed what I said yesterday [Sat] about going to the doctor Friday. The dressing is a five-day dressing and advice is, the less disturbed the better unless it's obviously going badly. It appears not to be. In your case, being ulcerated, it was of course infected.
Yes, he can come to my house. In fact, he lives quite close. We discussed that with him. He's said from the start he's always been happy to do that.
Careful observation is the key, and no more falls would be a good idea. Thanks Julie.
Ros February 24, 2013 at 5:09 PM
A motto one could/should live one's life by, a la Denis Wright:
"An interesting week to look forward to, then".
Couldn't beat that, really.
Bob Lake February 24, 2013 at 9:07 PM
Full circle with your typing Dennis - one finger and a lot of mistakes to correct. Remember those days? But there is still nothing to fault with your use of the English language. How do you do it? Thinking of you.
Replies
Denis Wright February 26, 2013 at 8:06 PM
**smile** with most fingers plus a thumb on the left hand, Bob. You have to take serendipity with the use of the language. And may I add re your "horse" response that you said nothing at all I could possibly find offensive or embarrassing.
pegsiskatzencats February 27, 2013 at 7:53 PM
Eek! Skin tears are the worst! At least from this side - very scary to see. I remember them well, taking care of my grandmother & mother - epidermis like tissue paper.
I'm so glad you still have your sense of humor & can convey it here & on Twitter.Your typing is fine - again, from this side. I don't know how laborious the process is, but I'm glad you make the effort. Yours is a voice I always enjoy. :) XXXOOO
Ros March 2, 2013 at 9:59 PM
Bring on all the boring posts on "What's New" you can muster! I can't get enough of 'em!
xx
Julie Lake March 3, 2013 at 7:54 AM
Not a good week for you both, Denis. Amazing that you are still on your feet at all and not bedbound. Thinking about you fondly in the Lake household.
Denis Wright March 4, 2013 at 4:26 PM
Thanks, Julie L. Did you by chance see the latest posting on the ramp?
Sunday, 24 February 2013 11:22 AM.
Weekly roundup. A period of quiet turbulence, I guess, is the best way to describe it, with the highlight being Thursday night's tumble as related in the last two days' reports. Today the bruises are now appearing on the right arm and fingers; in particular the little finger, which is half black back and front and looking a good candidate for leprosy. [Not quite – don't get too excited.] No wonder it felt painful on Friday morning when I woke.
The wound, which we can't see because of the covering, would appear to be OK. It hurts occasionally but generally it's not bad unless I accidentally bump it. Yes, I can manage that going through doorways. The left arm is slowly getting back to being more normal though getting a cup to lips is still a pain in the ... arm, but the effect there was purely muscular.
I had a small seizure yesterday, when I was caught by it in the bathroom, making eight for February with four days to go. It's an all-time record I'd prefer not to have, considering I thought five for the whole of January was excessive. The seizure's location most visibly apparent in the arm and fingers has further disrupted my judgment of finger pressure and key picking on the keyboard, even with the left hand. I look up to find a jumble of letters and words mis-spelled that I have to patch up. This makes typing a tiring, time-consuming thing, but don't tell me to stop, otherwise what dialogue with the outside world do I have?
Presumably Avastin will be infused tomorrow. I'm expecting the protein count to be high. The test was taken the night of the fall down the steps, and the time that I had the first fall the count doubled. But this wasn't such a serious one, so maybe its effect will be limited. So far the wound shows no feeling of infection, so I don't see that being a factor tomorrow.
An interesting week to look forward to then.
Saturday, 23 February 2013 9:41 AM.
Just to report that the muscles in the left arm are behaving a bit better now. At least I can get a cup up to my lips without groaning too much. We went to the doctor yesterday and had the area of epidermis removal thoroughly checked out, cleaned up, dead and dying skin snipped away and repackaged as it were with the dressing designed for this task. It feels relatively comfortable and seems free of infection of any sort at this stage. It has to stay that way.
Friday, 22 February 2013 1:53 PM.
I managed to fall down stairs last night on to a brick path, in spite of the extreme care we were taking. The good news is that there appear to be no broken bones. The bad news is that contact with the brick surface ripped a large rectangular chunk of surface skin from my right arm, revealed only when we took the coat off at home. Fortunately the Gap Year skills included a St John's First Aid Certificate and a desire by Christian to build a decent kit and bandage collection for all types of emergencies, and we had the perfect one for this. Medical advice was 'no use going to Emergency Department' as they'd do just what we did, and see the GP today.
The left arm is more troublesome as there has been a lot of muscular wrenching making all sorts of mechanical operations difficult. That should pass.
The real danger is that my healing ability is now very slow, which means the constant danger of infection and even more sinister, development of ulceration with wounds that won't heal. This has critical implications for treatment of the brain tumour and could lead to abandonment of Avastin treatment. No need to spell out the implications of that.
So we hope that the healing process, carefully monitored, will happen as quickly and successfully as possible.
Wednesday, 20 February 2013 11:10 AM.
I seem to have a bit more energy today compared with yesterday, when I had that 'run over by a steam-roller' jazz. Hoping that's maintained. Proteinuria test collection starts tomorrow.
I've taken to holding the walker as lightly as I can instead of holding on to the handles like grim death. I remember our dear old Mum doing her daily walk at age 87 holding on to hers as if she were pushing a rotary hoe. If I do this, it makes me walk with better posture and keep turning that right foot back into proper walking position instead of splaying out. I can feel my back straightened by this technique too. As long as the walker is there I can hold it lightly, and rebalance when necessary.
Monday, 18 February 2013 8:36 AM.
My sister Jan had a query that reminded me I hadn't mentioned the result of the Dilantin test last week. It was 49, which is a good result in the sense that we are as close to where we want to be with that medication. In one way if it had been wildly off the scale it would have been something relatively easy to correct and would provide the simplest explanation for the increase in seizures. But the main thing in this is to try to eliminate variables when working out treatment, and that's one down.
Other than that, it's steady as she goes. Nothing's better than it was yesterday, but nothing's worse. That's the best we can hope for day to day.
This is the week I'll be providing the sample for proteinuria analysis. One week till the scheduled Avastin dose. It comes round ridiculously quickly.
Sunday, 17 February 2013 10:08 AM.
I looked at the entry for last Sunday and in many ways this one could be a duplicate, so I won't repeat it. But there are some differing observations.
In the whole of January I had 5 seizures. In February so far I have had 6, but we are not far past the half-way point in the month. The last ones have not been strong but they seem to have caused or signal a continuous physical weakening. To walk across a room unaided by the walker or an arm would be an act of folly, for the right leg could collapse at any time. So it is in getting from point A to B that I have to be totally alert.
I probably overdid it a bit yesterday finishing this blog story, but it is one I wanted to tell. I start composing it at 7 am and by the time it was written, pictures located [thanks, Tracey!] and resized, and the whole formatted in Blogger's restrictive program [oh, to be able to use InDesign for tricky formatting], had slept half the afternoon away, it was just before midnight that it went online. No online social life yesterday!
Everything I do just keeps taking longer. That's how it is. Hey but how many of you could write 2000 words in one session in a day? Hmm?
Wednesday, 13 February 2013 9:17 AM.
Again it's the roller-coaster syndrome, with a seizure last night just after coming back from watching Tracey's rehearsal. My first time out anywhere, let me add, since before Christmas except to go to the hospital each 3 weeks. Well, I'm not prepared just to sit around without moving if it means missing things that are important to me – to us. Maybe it's an argument for going out more, not less. But each time this month [4 times in fewer than 14 days] it's come immediately after or in conjunction with physical activity – and of course, I pay when walking and balance become more difficult.
Apart from that, things were going along as smoothly as I could have hoped. Nothing else has obviously changed.
Sunday, 10 February 2013 8:03 AM.
It's been an up-and-down week. The three seizures since Friday less than a week since the full Avastin dose have been puzzling. In some ways they've been milder individually, but have weakened the right side – or perhaps demonstrate a weakening of the links between brain and right side. I feel that any physical stress on the right arm will set off another seizure, and it feels much more leaden in the way the right leg weakened. My main concern is that seizures increase the danger of independent activity like going to the bathroom, and even to using the walker. That is, I may get caught unable to move back to a safe position if a seizure suddenly hits. So I am very alert for any signs of an approaching seizure when washing my face, cleaning teeth; anything.
This may settle as the week goes by. I have no idea. I do know that I don't want the right arm to be back in a sling as it was in the months before I was given Avastin.
Comments 8-17 February
Tracey February 8, 2013 at 12:06 PM
I don't usually make comments as I have always felt that the blog is 'Den's thing'.
I always appreciate your insightful comments Bob, and the stories you add to the mix. I fear that if other people were to contribute postings, the result would be just as much time and energy spent this end, in formatting and commenting on them - we all know he couldn't resist :-)
More importantly, the blog would no longer be about Denis and his journey, which has been very much the point.
Denis has spent a long time now, years actually, keeping everyone else informed and also entertained. I know you all appreciate how much time and effort this takes, not to mention answering the countless private emails and messages that this blog generates.
The blog has brought so many outside people in, who now feel very close to Denis and his circumstances. People that he hasn't spoken to in many years and probably may never have again, if things were 'normal'. That has been a wonderful thing for Denis and also, I feel, for them.
But then there are the people who are actually, physically here. Den's time is just as precious to us as it is to the many people who now feel that, in some small way, they own this journey as well.
So now, the selfish statement of my heart....
I sincerely hope that you would all wish, or at least understand, that as things progress into the end times that it will finally be a time for it to be just about Denis....and me....and his family.
Trace xo
Bob Lake February 8, 2013 at 1:02 PM
Of course we understand, Tracey, and will keep going just as long as you and Denis want. Wishing both of you all the best in these very difficult times for you.
Bob
Joan February 9, 2013 at 9:39 AM
I feel tears welling up in my eyes as I read your post, Tracey. Selfish is something you certain are not. Although you say the blog is Denis' "thing", I know that behind the blog stands you, supporting, loving, and helping Denis in every way to rediscover and reform his life in such a remarkable fashion.
The blog is an invaluable contribution to those of us who post and a much wider audience who "lurks", and it will continue to contribute and inspire long after the postings cease. Without you, it wouldn't exist.
Much love to you and Christian, who also, I know, is a tremendous support and comfort.
Joan
Anonymous February 9, 2013 at 12:54 PM
Denis, Tracey, like most of the lurkers I check daily for new updates. But I've resisted commenting for the reasons that Tracey states so gently, in her comment above. Just this once more, to say that you and loved ones are daily in my thoughts.
kvd
Anonymous February 9, 2013 at 1:28 PM
I must agree with kvd. I always check the blogs but have commented less as I do not feel I need an answer. All the best to both you, Tracey, and to your motorcycle psychopath. I hope this time is as smooth and easy for you both as it can be. Good wishes? Anne P
Denis Wright February 10, 2013 at 9:09 AM
Thank you all for your comments. The last thing I would want to do is to stop people from commenting because of the fear that it might impose some burden of response on me. That's not the case but Tracey is right – the time is now running short and as you see, less predictable things [if ever any were predictable in this saga] are happening more and more often. This means I need to carry out the wish of us all, and that is to spend as much time with family as possible.
Don't be afraid to make comments. At the same time, I assure you that I won't be afraid not to. Deal?
Denis Wright February 10, 2013 at 9:35 AM
I just checked the spam filter for the first time in a few days and was annoyed that it had decreed a response by Ros [shown here as of 7 Feb at 12.48 pm] as spam!
Because I find it of special interest and may be helpful to others with neuro-degenerative disease I'm going to reproduce the particular portion here so it won't be missed:
PS Dave's Physio has taught me how to "wake up" a muscle when the nerve transmission is just not happening….
So...when Dave is e.g. trying to lift a limb but he can't send a message to that muscle, he relaxes for a few moments while I firmly tap/massage/palpate the muscle - just for 10 secs or so. This seems to (not always) let the muscle know it is supposed to be receiving a message and often then gets its act in gear!
Apologies to Ros on behalf of Blogger's inbuilt anti-spam program. That's the second time a legitimate posting has been placed in the junk.
In my case, it wasn't that the muscle was inactive; on the contrary, it was the muscle's activity that set off the seizure response. You don't have a spell for toning down the response, do you? :)
Ros February 10, 2013 at 11:51 AM
Ah...wouldn't some (pl) magic spells be nice - for all sorts of reasons right now!
There's always that risk of "giving advice" (don't I know it - receiving it, unsolicited, as often as we do!) - the advice-giver rarely understands the intricacies of the medical condition and the the physiological manifestations on a particular body.
And Denis - house-rules always apply. No pressure, ever, to comment-on-a-comment. It's a deal. As long as you know we are all still reading whenever it is you write - and all wanting what you want/need for you - and for all of you.
Thank you, Tracey, for saying what you have said, and for the forthright, gracious way in which you have said it. I want every person to have someone in their lives that champions them, as you and Denis do each other.
Anonymous February 10, 2013 at 6:44 PM
Errors in my comments are contributed to by your very difficult spam picker (or at least that is my excuse for rogue question marks and spelling). I continue to enjoy your blogs very much and they spur me on to recollect my past.
As do all your followers I hope there is some magic. I will watch but do not ever expect that you will reply and will just hope you are enjoying time with your family. Anne P
Anonymous February 13, 2013 at 1:10 PM
Well, I'm glad you went to the rehearsal. I bet you enjoyed it, too. The seizure: not glad. The lack of apparent, immediate, further deterioration of kidneys: glad.
It's like the story of the farmer who found a horse...
Julie M xx
February 17, 2013 at 11:17 AM
I did enjoy the rehearsal, Julie. I'm hoping to view a complete runthrough [hopefully a costume one] before it goes to the Town Hall. It's a fun piece - a pure farce of course. Those Farndale Ladies sure get themselves in a mess when they try to perform Shakespeare!
Saturday, 9 February 2013 9:41 AM.
Look at that. Until I invoked that auto-datestamp I thought it was Sunday. I've gained us all a day.
This morning when I got up I thought I'd test myself. I did nothing more than clasp hands and stretch them above my head, lower them and repeat the exercise 20 times. I got as far as 7 when I felt the seizure grip the muscles just exercised. So I lay down till it passed. It was mild, maybe a minute, and returned 5 minutes later but in the fingers; mildly, and took about 10 minutes to settle while I lay as still as possible. I've had little post-seizure reaction.
I didn't expect to get that one, but it shows one of two things - either that any repetitive flexing of those muscles will set off a seizure, or that I'm doing exercise at the wrong time of day. Maybe first thing isn't the best time. I'll try at another time of day when I am more awake.
Oh, I guess the other alternative is that it's all in my head. I don't think so. I like the exercise and don't want to avoid it. Whatever happens, the consequences are surely physical.
The right side kidney area, and sometimes the left, are usually painful now, like a stitch in the side I used to get in long-distance running. It comes and goes. I don't like this.
Friday, 8 February 2013 1:13 PM.
This morning, when I got up at about 6.30, I did what I often do – a simple exercise I can describe only as 'vertical pushups' against the bathroom door frame. I was pleased to feel it flexing the muscles in the arm, shoulder and neck. After about seven of these I felt the all-too-familiar sensation that those muscles had been gripped by a seizure, so lay down quickly before it got to my leg. It lasted about 90 seconds first time around, and for a couple of minutes five minutes later. I then slept deeply till 10.15am. Goodbye morning.
The relationship between exercise and seizures has been a constant puzzle to me. There's no doubt there is one, because this sequence has happened several times before. Yet I've often exercised strongly with no sign of a seizure. I can only surmise that it sometimes acts as a trigger at a time when a seizure is likely anyway. The last one was 2 February – before the full Avastin shot. I had been feeling the right leg was slightly improved, as was balance. Sadly that seems to have passed with the last seizure.
I have no choice. I must continue to do some exercise. The rate at which weakness sets in without exercise is alarming.
Thursday, 7 February 2013 12:52 PM.
The headache was finally reduced to low fogginess by last night, and hasn't returned to its former strength, for which I'm grateful. Sleeping patterns are getting more and more unpredictable and I feel very leaden when I wake. In other ways things continue as they were. I was able to focus enough to finish my posting. From now on there are likely to be fewer as I focus on other things.
Wednesday, 6 February 2013 2:24 PM.
The headache I woke with has persisted and I will take myself off to sleep very soon. Usually they go within an hour of getting up. I remember waking from a ridiculous anxiety dream and kept trying to solve the problem even after waking. Stoopid!
Although my legs are leaden and swollen, especially the right, I am determined to exercise them even though the left is barely responding to the signals. But if they lose physical strength as well, then that makes the problem worse.
Tuesday, 5 February 2013 12:07 PM.
Happy birthday, SJ! ♪
I can't really complain, though I felt a bit whacked after the infusion. I had the feeling that I was better balanced after yesterday's sleep, but maybe that was psychological. Whatever helps is fine.
The full treatment leaves me with a vague unpleasant taste in my mouth and of being dried out, so I must drink more water. I woke with a headache, which is a bit odd, you would think, after being relatively headache free for some time. Perhaps the tumour doesn't like getting hemmed in a bit more. Probably it's just the treatment. Panadol might be a good idea with lunch.
Spots quickly emerged on both arms and we'll see how big they get. It intrigues me that it is the main part of my body where they appear. Feet/ankles remain swollen.
Things could be worse!
Monday, 4 February 2013 3:53 PM.
The protein level has zoomed upwards from .50 to .62. I had expected it to be higher than .50, but hoped it would stay within the .5+ band. Not so.
As decided, we went ahead with the full Avastin anyway. I am feeling pretty worn out now.
I have to say that I was shocked at the deterioration in my ability to walk outside – which I hadn't done since the last Avastin treatment. Even on Tracey's arm it was a laborious task. The right hip, knee and ankle are not coordinating, and to raise the right foot up high enough to get into the car is very difficult.
We will wait now and see if the full-strength Avastin shot can hold the fort a little longer. You can imagine, if I cannot support my own weight to get to the bathroom, the whole game changes. I can do this now, but for how long at this rate of deterioration remains to be seen.
Replies 1-8 February
Anonymous February 1, 2013 at 8:02 PM
Friday: Reading Thursday blog about the night seizure -sounds horrible. It must be frightening. You describe it so well -perhaps this is the first time this has been done, and may be of much use to others afflicted by this dreadful,seemingly random, blight. And to their close ones.
Hugs.
Julie M xxx
Replies
Denis Wright February 2, 2013 at 11:21 AM
Hi Julie. I think I've said before, the only three things that really concern me when a seizure starts are how long, how strong, and where in the body.
I don't feel frightened – I usually describe for Tracey fairly clinically [maybe with a few expletives] exactly what's happening and where, if it's not visible. I figure that information may be useful if it won't stop.
Anonymous February 4, 2013 at 3:28 PM
That's a good point,which perhaps other people with tumours should be alerted to, about describing to Tracey what is happening (in case it doesn't stop).
I'm glad you said that about not feeling frightened. That would be most unBuddhist, in allowing fears to become the reality, rather than the present experience to be the reality. I'm terribly unBuddhist, myself.
Julie M
Ros February 4, 2013 at 1:40 PM
I'm trying to imagine how it would be to have the feeling of something constantly stuck in my throat...
Hoping the white witches are being kind to you (and Tracey) today. xx
Replies
Denis Wright February 5, 2013 at 12:29 PM
Thanks, Ros. The infusion itself went like clockwork. But I did get the White Witch I regard as the most brilliant vein finder, so that wasn't too surprising.
Bob Lake February 4, 2013 at 5:15 PM
Oh Denis, what a disappointment about the protein levels and your deteriorating mobility. Going back to the full Avastin seems to be your only option, but what a hell of a throw of the dice.
I am sorry we are not closer ... it is more than a year since we saw you and I would like to ask you - just where do you draw the strength from to fight on against such odds? We can only hope that the Avastin lifts you again and that the kidneys show as much resilience as their owner.
All we - your friends - can do though, is to hang in there with you.
Love to you both.
Bob
Replies
Denis Wright February 5, 2013 at 12:46 PM
Tracey is my strength, if you want the short answer. Family and friends like you also, plus the fact that one doesn't really have much choice in the end. As long as the heart keeps beating, the mind and body do what they can, simply by biological imperative. There's a difference, I believe, between giving up and letting go.
Is it a year? Amazing. You know, there is some contentment for me to sit here, in touch with those who care, but in my own space and time. I'm not sure everyone appreciates this, but you will understand how I value that control as other bits of independence slide away.
Anonymous February 4, 2013 at 7:45 PM
Feeling downcast to hear the protein news. I'm with Bob on those wishes. Just keep on keeping on as best possible -each day holds special gifts.
Julie M xx
Replies
Denis Wright February 5, 2013 at 12:48 PM
Thanks, Julie. That's true. xox
Julie Lake February 5, 2013 at 11:29 AM
Have read the Feb 4 post with great concern. Nothing worth saying about this except that, as always, our thoughts are with you. This is your Scylla and Charybdis; twin hazards forcing dangerous choices in this long, rough voyage. All you can do is steer as well as you can.
Replies
Denis Wright February 5, 2013 at 12:57 PM
Thanks, Julie. I am fortunate to have a good navigator and willing oarspersons! [Being PC can be ridiculous at times, but let's not go there.]
I'm hoping this development comes as no shock or surprise to anyone. I think I've prepared the groundwork for it since the start. I appreciate that you can see this. We now don't think about the kidney hazard and focus attention on the other with the little room to manoeuvre that we have.
Joan February 5, 2013 at 2:08 PM
Perhaps it is possible that you will regain some mobility with the full Avastin treatment. If so, the quality of your life and especially Tracey's will improve, and for however long your kidneys can serve you, you will be able to do more for yourself and others.
I'm grieved to hear about the kidney results. But as you say, you must work with what you have and leave behind what you do not have. What will happen, will happen, and now that you've made this choice, you can continue to write and enjoy your family and friends for as long as you are able. Knowing you, that will probably be longer than you expect.
Bob Lake February 5, 2013 at 10:18 PM
Glad to hear that you are getting a little relief from the latest Avastin treatment, Denis. Let's hope it lasts. Your 'can't complain' and 'things could be worse' comments remind me, once again, how comparative things are; everything stands in relation to so much else.
Anonymous February 6, 2013 at 1:45 PM
Hope your headache did not stay around. Being dehydrated can encourage headaches, so perhaps that was it.
And what a lovely day it is :)
Julie M
Bob Lake February 6, 2013 at 3:13 PM
Sorry about that headache, Denis - hope it does not persist.
And there is nothing 'stoopid' about carrying a dream over into an awakened state (at least, I hope not, or I must be stoopid too!) Increasingly I find that I dream vividly, sometimes half awakening, carrying the dream forward in a semi-conscious state, then sinking back into the dream again (usually having made some logical progress that, unfortunately, does not last long).
I find my dreams are enhanced by that relaxed part-wakened, indefinable level of consciousness which links different realities. To tell the truth, I just love the times I spend drifting in and out of my fantasies. They make sleeping a pleasure.
"I do not know whether I was then a man dreaming I was a butterfly, or whether I am now a butterfly dreaming I am a man.”
Stoopid?? Maybe.
Best wishes.
Bob
Ros February 7, 2013 at 12:48 PM
Oh Denis...I wish there were a way to bottle your grace and equanimity.
PS Dave's Physio has taught me how to "wake up" a muscle when the nerve transmission is just not happening. It would be easier to show you (wish we lived around the corner instead of 1,274kms away - according to Google maps).
So...when Dave is e.g. trying to lift a limb but he can't send a message to that muscle, he relaxes for a few moments while I firmly tap/massage/palpate the muscle - just for 10 secs or so. This seems to (not always) let the muscle know it is supposed to be receiving a message and often then gets its act in gear!
Just a thought....
xxR
(We don't like it when people give us unsolicited advice. Sorry if it feels like that. Truly.)
Bob Lake February 8, 2013 at 7:30 AM
Any respite, I suppose, is something Denis, and we must be grateful for that. If, as you say, your blog postings are going to become less frequent - are there any other ways in which we can maintain regular contact? If you find yourself limited in energy and focus, would you like to invite your friends to contribute postings on issues of your choice? Just a thought but we would like to stay the course with you.
Love to you both.
Bob
Sunday, 3 February 2013 9:12 AM.
Looking back at January, the seizure pattern has a certain consistency:
Jan 5, 15, 20, 25, 30. Note the gap between 5th and 15th. February has started not so well with a seizure breaking the 5-day pattern, waking me from my afternoon sleep yesterday at 6.30 pm - fingers, total arm, neck, right side of face, and down through the torso. It was only about two minutes but had some unpleasant if minor aftershocks, one being trembling lips. I would have looked like I was on the point of crying, but it was simply an uncontrollable brain reaction just like any other seizure activity. It went away after a few minutes but my speech was affected for much longer – lispy and a little slurred. This morning the main effects are weakness, apparent tiredness, lassitude [or lack of concentration], and the omnipresent sensation of having a large pill stuck firmly in my throat.
That's all I'll say, except we hope that nothing prevents the full Avastin infusion tomorrow. What happens to the kidneys becomes increasingly irrelevant.
Saturday, 2 February 2013 9:32 AM.
Yesterday was a better day in terms of energy. That seems to be the thing that makes the difference. I wish I knew exactly why it varies daily, but then earthquakes aren't continuous – pressure builds up; then it's released. Maybe it's more like that.
This morning it feels like run-over-by-a-bus effect with no apparent reason. It's not painful. Decisions you take in an instant take much longer. All activity does. Thought process are slow. The right knee seems either to want to be in either a totally yielding position or locked rigid.
But I'm here, and may pick up through the day. Worse things happen at sea. Yeah.
Thursday, 31 January 2013 8:30 AM.
Not the best of nights last night. I lay down on the right side and drifted off, when I could feel something peculiar with the left hand, like a smooth and cool cylinder the size of my arm. Turns out it was my right arm, quite without any feeling in it at all. A seizure began at 1.40 am unlike any other I've experienced, starting in the arm and going down to the hand, moving it differently to a 'normal' seizure. It moved on strongly to the right side neck and face, lips, cheek and eye, well up into the forehead. Then it settled, but came back strongly in the stomach and kidney area, making me nauseous, and briefly to the leg. About three minutes I think, but paralysing parts of the right side for some time. There were various after-shock tremors, seemingly more widely across my body.
After it settled a bit, I slept a couple of hours, waking with mild arm tremors. I then read using the Kindle, finding that grasping it both hands [as you must, lying down] had a settling effect on the arms. I didn't sleep any more and am tired now. My eyesight is weakened and walking more difficult.
I began the proteinuria test this morning in preparation for Monday's full Avastin infusion, all going satisfactorily with the test. I don't feel happy having the kidney shaken up with the seizure but it probably won't make too much if any difference to the reading. I just don't know but do remember how much it counted when I bruised them falling over mid last year. There's no delaying that test.
Tuesday, 29 January 2013 10:06 AM.
All quiet on the seizure front. I think I've got my voicebox back as well. Both feet are swollen today. I may have to lie down and get them raised as high above my heart as possible. The difference in an hour is quite impressive, though the ankles seem to remain swollen.
Maintaining focus on whatever I'm doing can be quite difficult, but it's critical. The times when I have almost fallen have been those when my mind's on something else apart from standing or walking.
Sunday, 27 January 2013 9:05 AM.
It has been roller-coaster week – and month – in terms of mental and physical challenges. Nothing is quite so confronting as having to make all or nothing decisions. Here I'm referring to the decision to return to a full Avastin dose.
That it was a classic example of Hobson's choice couldn't be more clearly demonstrated than the events of yesterday afternoon. A seizure while sitting here round 3 pm was not overtly too violent, though giving my right hand fingers a good working over, creeping up the arm with its 'bands of steel' effect, and then focusing on the right side of the neck. This was the burning, tingling effect that says brain cells are being destroyed or displaced. It's the one I know I'll pay for later.
It then moved briefly into the chest, into the kidney area, and down into the thigh and knee, finally to the ankle. This is the time I prefer to be lying down, but temporary semi-paralysis means I can't walk in safety to the bedroom. I also knew it hadn't finished with me, so Tracey gave me under-the-tongue medication, the name of which I can never remember [Clonazepam?]. My speech was slurred as the result of the seizure activity in the neck. So I waited until I felt I could stand, and walked back to the bedroom. Tracey was watching out all this time, but there's not much she can do while a seizure is in progress. After some more minor seizure activity I went to sleep.
I woke a couple of hours later with speech still affected, but that settled down and it's normal now. But my mobility has taken another hit and every step now is a conscious process. I find I am missing keys on the keyboard or pressing the wrong ones. These few paragraphs were riddled with errors, and have taken an hour to write. It's odd to look at the keyboard asking myself which key I want to strike.
Twenty days have produced four seizures, with new brain functions attacked. Clearly, there really is no choice. Doing nothing but sitting on the half dose of Avastin will bring about more debilitation than anything that will happen to my kidneys. Even though the full dose will have unpredictable side effects, that's better than losing at greater speed the abilities I have now. That's 4 February. The irony is, all it's really doing is going back to the same treatment I've been on for more than two years.
Comments to 31 January
Bob Lake January 23, 2013 at 12:44 PM
Denis, unexpected good news inasmuch as anything that could slow down the decline or maintain some quality of live gives room for a little hope. And we are all hoping that the return to full Avastin will work for you, giving stability, minimising pain, and keeping you at your blog!
Cheers
Bob
Denis Wright January 24, 2013 at 11:46 AM
Bob: I think you put it in the terms it needs – thank you very much. You've nailed it in a way many have not. Pardon the bold face in the following paragraph but if it catches the eye of others looking through too-rose-coloured glasses it will serve its purpose
I don't think I have written with enough clarity about just what the return to full Avastin means. I think I need to explain it better. This course of action is a very risky strategy that could quickly end in an unfortunate way. I will write a regular blog posting about this because I see that I have understated the considerable risk it entails.
Anonymous January 28, 2013 at 10:04 AM
Yes..from my understanding, your kidneys are not 'stabilised', but the choice of risking their further decline seems the better of two risks at present. After the news of the latest seizure, I am wishing the full avastin dose would hurry up and happen. Wondering how you are today..
Julie M
Ros January 28, 2013 at 4:29 PM
I'm wishing the same, Julie. Feb 4th seems a long way away after the last seizure. Wishing our lives away - but it can't be helped. It's just the way it is, and the way we are.
We all want to wish the best, think the best, and feel the best we possibly can (and some might add - pray the best) for Denis (and Tracey). Because we all love Denis, (and Tracey) and we want him to be here with us. And we feel powerless to do anything but let him (and them) know we are doing all the best thinking and wishing (and praying) we can do, in all our powerlessness to do anything else.
All we can truly hope for is that, while we trust and respect Denis and Tracey for all their wisdom and knowledge and profound understanding of all their options (no-one knows better than they do) that they know, deep in their bones that we are doing our best. Through our wishes, thoughts and hopes, (and for some - advice and prayers) we hope they know we love them, as inadequate as all that is at this time.
Denis Wright January 28, 2013 at 9:33 PM
Feeling quite stable today, Julie - but then I slept half of it away. So I have energy now and it will probably hang around a while. Maybe I should do very brief updates more often but I'm too garrulous once I get started!
Often the last week before Avastin is quite peaceful, like a clock running down, so I won't wish it away. I don't wish one minute away except for when a seizure is on.
Denis Wright January 28, 2013 at 9:48 PM
Thank you Ros, for those comments. I understand that feeling of helplessness when other friends were/are going through serious or life threatening – and sometimes life-ending – crises, and feeling desperately useless. We know how you feel and I'm very grateful that you respect the thought and judgment we put into our decisions. If there's one thing all these responses do, it's to show clearly how people are thinking of us.
At the same time, I'm perfectly happy to have people feel the same way and not attempt to write it down. That's something I want to say. We know who you are, usually by your past actions and past expressions, so no-one need ever feel that we think you don't care.
The ones who matter to us most do. We know. I just regret that I fail to acknowledge it as often as I should. But then I know you understand that too.
Bob Lake January 30, 2013 at 7:43 PM
Thank you for keeping us informed, Denis. We want to know how you are faring and we check daily. We have been off-air for four days ... no computer, no lights, no phone, no frig - so this is why you haven't heard from us. Best wishes. Bob
Denis Wright February 2, 2013 at 11:03 AM
What? None of the advantages of civilisation? You poor things; you must have been terrified. What ghastly torture for you. :)
But you survived the terrible ordeal. If you want to see an extraordinary story of survival by people who didn't even know WW2 had happened, read this. zmkc gave me the link.
For 40 Years, This Russian Family Was Cut Off From All Human Contact….
Ros January 31, 2013 at 12:19 PM
Thinking. Of You. Both. xx
Denis Wright February 2, 2013 at 11:08 AM
Thank. You. Ros. Heh. Heh.
This is the first and probably only time you'll ever see me do the dot thing. Much appreciated!
Thursday, 24 January 2013 10:10 PM.
I attempted to explain the circumstances concerning a return to a full dose of Avastin in this posting.
Wednesday, 23 January 2013 9:36 AM.
The early autumn colours are coming. Isn't that amazing?
To the Oncologist visit yesterday. We talked about things since I saw him 2 months ago; especially about the continuous and accelerating decline in various ways. We looked at the kidney proteinuria question, and he said he felt there was a good chance the condition had stabilised. Enough, in fact, to tackle the major problem again – the tumour.
It surprised me, but he proposed, and I agreed, that we return to full-strength Avastin next time, and see what the effect is.
If it looks like an experiment, it is, but then the whole treatment has been that way right from the start. Even the radiotherapy/ chemotherapy track, though it's well trodden, is experimental in the sense that each case is different. Since September 2010, we have always been in new territory ever since using Avastin – an even more unfamiliar territory with my far exceeding expected life limits under the Avastin regime.
This gamble is probably better under the circumstances than just accepting the path of inevitable decline as it is continuing now. This is, as always, the hope for an extension of quality time rather than a reversal of the conditions we're living under now. I could still die much more suddenly from increasingly restrictive seizures, stroke or heart attack.
Going back to full strength Avastin may reduce seizure effects, and by reducing swelling, lessen the chance of brain bleeding. It may also create some chance of slightly improving walking/balance and reducing that of falling or collapsing because of seizure activity.
That's where we're at right now. Apologies for not responding to comments at the speed I would like. If you keep an eye on yours, I may get to respond. No response probably signifies agreement, not indifference, and all comments are read and appreciated.
Sunday, 20 January 2013 8:25 AM. [Updated 1.15 pm*]
Cool and overcast after a cracker of a storm last night, with plenty of rain and one gigantic bolt of lightning just up the road [I saw it!] that sounded like a bomb going off. One mighty explosion that made us all jump.
So what to report for the week? One Avastin hit, one bad seizure, lassitude, blurred vision, weakening neck [in the sense of damped signals from the brain], less ability to lift the right leg. The latter is marginally improved by keeping the leg raised above heart level for long periods. The foot swelling [both feet] goes down markedly while and after doing that but the ankles remain puffy. Sleeping patterns are very random. I've been relatively free of headaches. Small tasks become major [and careful] undertakings.
I feel like going back to sleep right now, but then with the storm and some kidney area discomfort I've had only about 6.5 hours sleep since 4 am yesterday. In fact, I may go back to sleep and leave my WHAT'S NEW housekeeping till later when the screen stops jumping around....
*PS 1:15 PM. I woke at 1 pm and have to say I felt like weights were pressing down on every limb. I can only barely move the right leg now, even without too much swelling. Rather a drag for walking you might say....
It seems the tentacles are threading their way through neural paths all along the motor centre for the right side and suppressing the signals back and forth with increasing speed.
For the first time I have had nagging ache in the left arm but that may be temporary. I hope so. It's my typing arm.
Comments 13-24 January
Bob Lake January 13, 2013 at 4:13 PM
Denis, how do you manage to type so much, so often, and with no sign of any deterioration in your use of words, spelling or grammar? I can only imagine the time and effort that is going into doing this.
It is, in fact, those 50 years of typing that are helping to hold it all together – and that you can do so also says a lot about how you have led your life. When the going gets really tough – and I know of no-one who has had it tougher than you – then this is the time when ‘automatic pilot’ to some degree takes over.
As a personal view, I think ‘automatic pilot’ is the essential being you have created, when all else is stripped away. What you then must rely on are your interpretation of experience, your knowledge, your habits, self-discipline, and your whole attitude towards the mystery of reality and self.
Gawd - don't I run on - but what I am trying to say is that I think you have 'done good'.
Our fingers are crossed for the next Avastin moment of truth.
As always.
Denis Wright January 15, 2013 at 10:15 AM
Tracey and I were talking about this [yes, we do talk about things, in spite of my joking statement in that other posting] and we think it's the reverse – that it's the automatic pilot that's being interfered with, Bob, leaving those others reasonably intact.
It's the way it feels from the inside!
Anonymous January 13, 2013 at 6:44 PM
You may be typing more slowly but nothing is apparent to the reader. I've always admired your accuracy (and your willingness to help others not quite so accurate). My fingers are crossed too. Anne P
Denis Wright January 15, 2013 at 10:45 AM
This also responds to Bob's first comment – there's a bit of smoke and mirrors in my typing ability mainly to do with using spellchecking fully, with its convenient right-click replacement of a mistyped word, and a great macro program that I've used for long enough for the shortcut to be automatic. Thus if you saw [which you won't!]
When Tracey and I, but not Christian, go to Oncology for Avastin [bevacizumab] after the proteinuria test, you can bet it's very interesting information.
what I've really typed is
When tr n i, but not cp, go to oncy for avt [bvz] after the ptu test, u can bet itss v intg info.
It adds not only to speed but to accuracy – and not having to use the capslock key and right side keyboard so much. The shortcuts program is capable of much more sophisticated things, but this is my general usage.
Anonymous January 13, 2013 at 9:13 PM
Yes, agree with both above. The word that comes to mind is admirable - which I don't think overstates so much as to cause embarrassment. Good luck to you both.
kvd
Denis Wright January 15, 2013 at 10:58 AM
Thanks, kvd, but the patient really doesn't have much choice. What I find admirable is the carer, which you have been, who constantly puts the patient's needs before their own in so many ways, in the face of something that can only end badly. I guess you can argue that if they love the ... [is there a better word to describe the person with the illness than patient, sufferer, victim?]... then they have no choice either. But to do it with the grace of the carers I know – that's heroic, because no-one else knows what that's like. No-one.
Anonymous January 18, 2013 at 2:53 PM
[is there a better word to describe the person with the illness than patient, sufferer, victim?]
Yes, a word I have coined, but claim no copyright for: ohomw - which is an acronym for 'one half of my whole'.
There's nothing heroic or noble or 'above and beyond' about strenuously defending, protecting, or just simply caring for that half of yourself without which you are no longer a whole person.
It's just what you do; ask Tracey.
kvd
Denis Wright January 18, 2013 at 5:52 PM
The sentiment is admirable for a couple who were living quite a different life, blissfully unaware of how everything was to change. I think though that there are those who care or have cared for other family members, friends or others whose lives they wouldn't normally be a part of, but it's perfect for describing the real meaning of 'in sickness as well as in health'.
Thank you for that.
b January 14, 2013 at 3:45 PM
This news, under the circumstances, is as good as it gets, Denis. We can all stop holding our collected breath. I don't think it had occurred to any of us that you might be making a drama out of nothing ... this must be your version of the classic understatement - like referring to the outbreak of World War 2 as 'a spot of bother'.
Cheers
Bob
Denis Wright January 15, 2013 at 11:00 AM
It is a spot of bother, no-one can deny. :)
Julie Lake January 14, 2013 at 9:26 PM
Modestly good news under the circumstances. Congratulations to your kidneys! Funny how we take all our organs for granted - until something drastic happens, as with you. Let's hope you can enjoy some relief from seizures for a while. We're getting a much-needed cool change this evening and hope you are getting it too...in you condition the last thing you need is the added discomfort of extreme weather conditions. Thinking of you xxxxxx
Denis Wright January 18, 2013 at 6:05 PM
Thanks, Julie. As you and Bob have said, we can all release that pent-up breath for a few days while hoping that one of the sudden things doesn't strike [you know what I mean], but it's a continuous process of drawing in the breath.
To be frank, there's no release from it at this end, especially when a new round of seizures hit, as they did the day after the Avastin treatment, when we might have hoped for a little peace. We really never get that.
Denis Wright January 15, 2013 at 11:13 AM
Hi Julie, and yes, we have warm things back on, hard as that may be for others to imagine. It was Ros who wrote, not so long ago, and these words should be sign-written in the sky [OK, gender-neutral]:
"Health is the crown on the well man's head that only the sick man sees."
I surely did not appreciate the truth of this for six decades.
Maybe this is why old people are so wise. They [and those who tend the sick] surely do.
Apparently the origin of this saying is unknown, but one source says it's Egyptian.
Denis Wright January 15, 2013 at 11:17 AM
I wish I could remember always to click the "Reply" button rather than start typing into the box that's open before me!
Anonymous January 15, 2013 at 6:31 PM
Stupid 'reply' button.
See below for what should (possibly) have appeared here.
kvd
Anonymous January 15, 2013 at 6:28 PM
It's called talking to yourself - which we 'mature' people are forgiven for - and is mostly the only source of a decent conversation these days imo :)
(This is in reply to your reply to yourself. Hope blogger can work that out...)
kvd
Denis Wright January 18, 2013 at 6:08 PM
I'm not sure I'm game to say that [sensible conversations] about me right now!
Anonymous January 15, 2013 at 8:57 PM
I am even more impressed. I am still struggling with predictive text's spelling superiority and tend to override it, in my conceit, rather than look at it! I hope to learn to take advantage of it. I do like Google's graciousness when it offers a suggestion. I was very glad to hear the good news about the Avastin. Anne P
Denis Wright January 18, 2013 at 6:13 PM
I don't use predictive text except on the iPad, but boy you have to be watchful. It can come up with some doozies that are easy to miss. [Hah! it suggested here 'doggies' for 'doozies'.]
Joan January 17, 2013 at 11:10 AM
Denis, thank god, fate, or just luck that you are not in pain. You seem to be entering the world inhabited by many thousands of paraplegics, who are also liberated into the virtual world they now can inhabit thanks to computer and internet technology. While not able to move around their own houses without mechanical assistance, they can move around the world, and not just in their imaginations.
If the kidney tests improve, perhaps a little more Avastin could see you reach another plateau. This is what I am hoping for. Please stay safe -- is plum cutting wise?
Denis Wright January 18, 2013 at 6:22 PM
We'll see how the kidneys go if other things don't intervene. I do know that something is weakening everything bit by bit. Now the neck is a concern. There are so many types of paraplegia. It's hard to make accurate comparisons, but while I have what I have then I'll use it.
Yes, plum cutting is OK – as wise as walking with the walker. I have a method - but if it becomes dangerous then I'll give it up.
Bob Lake January 17, 2013 at 3:20 PM
Denis - to echo Joan, the small mercy is that you are not suffering a lot of pain. I don't know how you handle this at all - or how Tracey does, either. Please continue to keep us informed; we have been with you for three years or so now, so keep it up as long as you can type. Your connection to the world is our connection with you.
All the best.
Bob
Denis Wright January 18, 2013 at 6:27 PM
This part of the blog's about being honest, otherwise there's no point. As you know, the last thing I'm looking for is sympathy or admiration – just an attempt to understand the psychology and physiology of being inside chronic health deterioration and what it does to relationships of all sorts.
Anonymous January 18, 2013 at 7:44 AM
hi Denis. I've just been reading the blog and now the latest news of you. All I can say is many 'magic words' about the seizures and wish their magic was just a whole lot stronger.
Hello from Melbourne - but right now in Allingham St in spirit. PS One of my favourite people at this yearly meeting (a woman of my age)has recently been diagnosed with a very bad form of leukaemia. She's here, white as a sheet and full of chemo, but her usual smiling self. Sigh.
Julie M xx
Denis Wright January 18, 2013 at 6:33 PM
Hi Julie. Melbourne's lovely, but whimsical in its weather as you know! I can only wish your friend well, with the same helplessness that people feel with me. It seems she has come to terms with what she's facing. That tends to make it better for everyone.
Bob Lake January 20, 2013 at 7:44 PM
Not good, Denis. This post is just to let you know that we continue to check your condition, at least once a day, even if sometimes we find it difficult to find the words to respond. There isn't much I can say that is positive at this stage ... except that we live with you through your blog, that we always hope for the best possible ... and that you really have put my head-cold into perspective!
Best wishes.
Bob
Denis Wright January 23, 2013 at 10:38 AM
Thanks, Bob – as ever. As you will see from today's entry [Wednesday, 23 January 2013] we are taking a new tack. We need a fair wind, no hidden reefs, and a strong sail.
Joan January 21, 2013 at 9:44 AM
Yes, Denis. I'm here too, checking every day.
We saw the lightning too. So close. And a SNAP loud enough to defrag my brain. Of course, the modem wouldn't work after that and I had to reset it. Usually storms knock out our DVD player, too, and it takes a few days for it to recover.
I suspect some of your discomfort comes from the extreme changes in weather. It's certainly that way for me. The heat is so stressful and the storms so violent. After that, I just feel heavy and want to sleep a lot.
I suspect your body is extra-sensitive and that you will regain some of your lost mobility when the weather settles down. If you find yourself imagining tumour tentacles creeping along neural pathways, imagine them retracting up those pathways like a movie played backwards. After reading Doidge's book, *The Brain that Changes Itself*, I'm convinced that our attention has some power to modify brain activity. In your case, you are dealing with a huge monster, but it was the virgin, not the knight, who tamed the lion.
Denis Wright January 23, 2013 at 11:26 AM
Re the storm power surges – out in the sticks you need to disconnect the phone line completely from the modem when storms are around. Having lost two modems years ago when living 10 kms from Armidale I know this only too well. In town the load is reduced per unit by the volume of connections. And of course these days we have very good anti-surge switches for both electricity and phone line that save a lot of sensitive equipment from sudden death. I know you're not connected to the power grid, but it's the [above-ground] phone line that's the killer.
On psychology and health: I know how much you want me to be well, and I think I understand how it feels for you that I'm not, especially when my health continues to deteriorate. I know you don't want me to die - you want me to stay around as long as possible. I'm grateful that you think so much about me and for caring as much as you do.
It's something I need to express – to everyone – that it's important to me, and to Tracey, that we know you trust we're doing everything in our power to keep me as well as I possibly can be.
We're using every ounce of our intelligence, our strength and experience, our philosophy of life [and death], and the deep desire of us both for me to live, to keep me alive as long as I can be, with a fair quality of life. The thing that gives me most comfort is the remarkable synchronicity of Tracey's and my thinking on this – right from 3 December 2009.
What I'm doing in this part of the blog, as you see, is charting the course of events from the inside - what I feel in every part of my body and consciousness every waking minute to be what's happening.
The brain can play, and usually does, an important role in health. Thinking negatively brings everyone down and magnifies the aches and pains. It's good to be reminded of this when faced with stark realities of mortal existence. Thank you for thinking of me and for trying to help in coming to terms with the second of life's two greatest mysteries.
Joan January 23, 2013 at 11:01 AM
Ah!!!, just as I had hoped for. Stabilised kidneys and a return to full Avastin. Put that cougar back in its cage.
Carl is now reading aloud to me *Life of Pi*. I've read it once, seen the movie, and now the second reading is revealing all the subtlties good authors put into their stories.
This is a tiger, not a cougar, but close enough. Denis, your subconscious chose a brilliantly apt metaphor for the delicately balanced dance of life and death that has become your life. This must be the reason this book has gripped me so deeply. The ending, of course, is another story. The tiger goes off into the jungle, back to the freedom of the wild, and the boy goes back into the safe captivity of civilisation. It broke my heart. I think I need to see someone about this :).
I have all my fingers and toes crossed that you are about to enter another long stable plateau of creativity.
Denis Wright January 23, 2013 at 11:34 AM
Ah. After a long period of composition of my response to you immediately above, I just found this. Let's see. That's all we can do. It's not just the cougar, we find.
Nous espérons!
Ros January 23, 2013 at 11:23 AM
I had no idea that returning to full Avastin dose was even a vague possibility. I'd assumed that the damage to your kidneys was irreversible.
See! All that mental talking-to I've been giving your kidneys has been worthwhile!
Keep on keeping on as you may, shining your own particular light.
Denis Wright January 23, 2013 at 11:55 AM
To be frank, neither did we. But the oncologist is a very clever man, and I believe, very wise in his estimation of optimising for the circumstances. I noted how well he took them all into account. If I didn't trust his judgment I wouldn't have accepted it.
This is no great cause for celebration – it is a cold calculation of the balance of risks and a swapping of nearly equal ONES, as far as I can see. When we make a decision, we simply go forward. Regardless of the outcome, I will not regret. Regrets are pointless, especially when we don't know what the alternative outcome might be.
You and Dave must have experienced such choosing between alternatives [insofar as they exist] in your long experience of MS, which continues daily for you both. There are some parallels between the two conditions, his and mine, however much they differ in other ways. You've given me valuable insights based on your experience, and I thank you very much.
Denis Wright January 23, 2013 at 11:58 AM
Dang capslock! Mentally reduce ONES to lower case!
Bob Lake January 23, 2013 at 12:44 PM
Denis, unexpected good news inasmuch as anything that could slow down the decline or maintain some quality of live gives room for a little hope. And we are all hoping that the return to full Avastin will work for you, giving stability, minimising pain, and keeping you at your blog!
Cheers
Bob
Denis Wright January 24, 2013 at 11:46 AM
Bob: I think you put it in the terms it needs – thank you very much. You've nailed it in a way many have not. Pardon the bold face in the following paragraph but if it catches the eye of others looking through too-rose-coloured glasses it will serve its purpose.
I don't think I have written with enough clarity about just what the return to full Avastin means. I think I need to explain it better. This course of action is a very risky strategy that could quickly end in an unfortunate way. I will write a regular blog posting about this because I see that I have understated the considerable risk it entails.
Thursday, 17 January 2013 9:47 AM.
I haven't updated for a few days. Following the Avastin there's nothing good to report except that I'm still here and can think and type. I was feeling quite chipper when I woke on Tuesday, but after my afternoon sleep I felt a seizure coming on when I got up.
It gripped my arm and fingers very suddenly and I knew it was going to be unpleasant, so got back to the bed before my legs were affected too badly. It gave the right hand a good going-over, tiring the fingers quickly, and then moved up the arm. I thought it might stop there when it paused a moment, but then it moved suddenly to the right shoulder, neck, and briefly to the face. It paused again so I took the opportunity to call Tracey in.
It struck again, this time in the kidney area, feeling like someone was squeezing it fairly strongly and making me feel nauseous. Then it moved to the hip and down the leg, and must have stopped after that after going back to finish off anything it missed on the way down.
I didn't take too long to recover, superficially. Within half an hour I could walk – using the walker, needless to say, because I don't walk anywhere without its support.
But I've learned that the true effect of the seizure takes more than a day. Within that time, the damage gets revealed. I woke this morning to be barely mobile at all, and walking, if it can be called that, has been a great struggle. Standing is a conscious process of keeping the right leg straight with some sort of symmetry to the left, but focusing on something else like cutting up a plum [quite tricky with just one good hand!] sees me standing with my centre of gravity more-or-less through the left side.
The only place I feel OK is sitting here at the desk, connected to the world, or in the lounge chair talking with Tracey or with the laptop or watching TV.
I must struggle harder to keep mobility, but it all keeps getting undone. I want to be able to move about on my own, inside the house at least.
All of this is relatively painless, I must add, so no-one needs to feel I am suffering anything like that. It's more like being bound down to a bed or chair, a little at a time. I would be a total wuss if all this involved much pain, but it doesn't.
Monday, 14 January 2013 3:20 PM.
Adapted from letter to family:
We're home again after the hospital visit. I feel almost like a fraud in that it went so smoothly. The 24 hour proteinuria test returned a value of .50 – marginally better than the last one [.51]. I didn't expect it, but it's good news that in spite of deterioration in other ways and the seizures, the kidneys appear to have held up over the past three weeks. So the infusion went ahead and all worked well.
I'm tired, but that's normal after a night's interrupted sleep. We just take it easy now and see how things go. I'm practically incapable now of moving more than a step without the walker, without a handhold or on Tracey's arm. Eternal vigilance is required when I move about.
That's about it. I suppose I should be pleased when it seems I'm making a drama out of nothing, rather than the other way around.
Sunday, 13 January 2013 8:12 AM.
It's been a week without seizures, although there were signs of one last night that didn't eventuate. I'm hoping to get through the next couple of days at least without one.
It's also been a few days of very hot weather by Armidale standards, and I think this has exacerbated the more unpleasant side-effects of the medical position I am in. Swollen feet indicate fluid retention which means heavier legs which means the now semi-paralysed right leg is a burden to move around, and other effects follow. Looking at the leg shows that it is weakening and changing its alignment, and the knee is unstable. This affects balance. Signals from the brain are not getting through. Physiotherapy would seem to be an obvious suggestion, but if you make it, it shows a miscalculation of the time-frame I'm operating in.
The walker ["rollator" – let's stick to "walker"] is now my saviour in terms of mobility. If I had not had physiotherapy on the arm that was in a sling 30 months ago and rebuilt its strength and partial usefulness, I would be in a wheelchair now. I'm glad I had the time then to go through those months of rehab of the arm – time I don't have now. But my upper body strength [such as it is thanks to keeping limited exercises up] gives me power to make balance adjustments that compensate for leg weakness and frozen joints when using the walker. It's a bit like wheelchair athletes except the walker is the chair.
I am concerned that the last few seizures have attacked my neck, and quite often now I feel as if my spine at that point is having trouble holding my head up. You will readily understand the significance of that. At this stage it is not a problem – it just feels like that drowsiness when you say "I am so tired I can hardly hold my head up." It may take only one seizure to change that dramatically.
The proteinuria analysis test result will be known [by anyone] only just before the proposed Avastin treatment. Therefore I go tomorrow for the Avastin 50% infusion not knowing whether or not it will be given. This is hard on everyone, including the Oncology staff, for whom the job of one may be to tell us that Avastin must now be withheld permanently.
I continue to feel lethargic and note that my one typing hand now hovers above the keyboard when I draw a blank on where a particular key is. Yet this is I, who have been typing with the keys in the same position on the keyboard practically non-stop for 50 years. You can imagine the slowing down of typing speed, especially when combined will difficulty bringing to mind the exact word I want. And, of course, hitting the wrong or multiple keys owing to a decline in coordination.
For other things, brain function is slow, and I'm sure Tracey will say there's plenty of evidence of forgetfulness and confusion at times. Sleep patterns are now chaotic.
This is not a whinge – I'm just stating the facts. I have had comparatively little pain so far, and few headaches, so no-one needs to worry about that. Annoyingly though, I will probably go to sleep now, after being awake since 4.30 am – and probably sleep till 1 pm.
Thursday, 10 January 2013 12:12 PM.
I began the proteinuria analysis collection this morning. With this hot dry weather I feel like there will be nothing to sample! Yes, I'm drinking plenty of water. I'm not overdoing it; just drinking the amount I feel my body is comfortable with. As I said before, I'm not expecting a good result this time around.
I'm feeling OK. I continue to be a bit weary, and sleep what I sometimes think is quite a lot, but when you add the hours, it's quite normal really. Sometimes when I wake, I feel like I simply don't want to move. In a way, it's quite pleasant to feel like that, but in others, I must admit I wonder about its significance in other ways.
The more I keep my feet elevated above heart level, the better they look, but I can't lie around forever doing nothing but reading.
I guess it's all compromise, like the battle of contradictions between what's best to combat the tumour, save the kidneys, cope with fluid retention, keep some level of fitness, protect my gut from being burnt out by drug residues and try to avoid headaches and seizures.
Sort that lot out.
Wednesday, 9 January 2013 8:35 AM.
Electricity is scheduled to be out most of the day. I'm just reporting while I can that I'm feeling better over the last day or so.
Sunday, 6 January 2013 8:56 AM.
A series of nasty seizures yesterday afternoon and evening did a lot of damage to mobility, and now I have to be careful with every step, even with the walker. These went on over the course of an hour and affected fingers, arm and upper torso including internal organs, neck and face, These seizures kept returning and we ultimately resorted to the under-the-tongue anti-epileptic treatment [Rivotril (Clonazepam)] that never seemed to do any good before. I had a serious dose of it and the seizures seemed to settle immediately. In fact, the tremor in the left arm was more obvious when the seizures on the right side subsided.
I went to sleep shortly after, and when I got up several hours later was hit by another seizure which went on for a few minutes. I was in the bathroom standing at the time but felt it was too risky to attempt to move. Finally it stopped enough for me to make my way carefully back to bed until I was satisfied that the attack was over.
There are really no up-sides to this I can see. I do seem to have a fairly regular pattern of getting away with about 10 days seizure-free per 3 week cycle. My last seizure was on Christmas night, so fits the pattern. The bother is that the seizures are becoming more severe and affecting more parts of my body; e.g., this time I felt it pass across my right eye, blurring vision which only now seems to be getting restored.
This time I could feel my kidney pulsing on the right side as the seizures progressed, and with it low-level nausea. It doesn't augur well for the next 24 hr proteinuria kidney test which we'll do next Thursday. Yes, it's come around again. If the level hasn't zoomed up dangerously I'll be very surprised.
I wake each morning feeling rather lifeless, I must admit. The period of sleep of about six hours seems to put the right side of my body into some sort of torpor, and it is a struggle to move it. I find it hard to drag myself to the bathroom but I know I must get moving.
My feet and ankles continue to be puffy, particularly the right. I've tried raising the leg for long periods, keeping feet warm, keeping them cold; there seems to be no pattern. I pay attention to the food I'm eating, the effect of exercise, socks and footwear, but there are no clues as to why for half a day the swelling subsides a bit and then returns.
After I shuffle along and eat something in the morning, some feeling of life in the right leg returns and the bodily shakiness subsides, but it's a bit of an illusion. I feel best sitting here, connected to the world by the computer. I keep thinking of the Avatar character who has no physical power until they turn him into his avatar and let him loose amongst his green friends.
My head seems reasonably clear, though tiredness descends suddenly. Then I think of all the things I was going to do while awake but was fiddling round with something else.
But I suppose that's what I should do – whatever seems right at the time, and hope my friends and family forgive me for my silence when they've written to me so eloquently.
Tuesday, 1 January 2013 8:43 AM.
MAY THE NEW YEAR BRING US ALL NOT SO MUCH WHAT WE WANT AS WHAT WE NEED.
That's my thought on the subject, except that you and I have made it to the beginning of a new year on Planet Earth. I feel battle-scarred by the Year 2012; both Tracey and I do – but we are here and have seen in 2013.
An annual report wouldn't be all that helpful. It would just detail the relentless decline of all functions, mental and physical. Slow or fast, hard or easy are relative terms. So I'll scrap it and say we look forward and not back, and face each challenge as it comes our way.
Sunday, 30 December 2012 9:03 AM.
It's that period between Christmas and New Year when the temptation is greatest to indulge in foods that are high in refined sugar and salt, and for me that's not a good idea. I'm usually reasonably disciplined in this, but I still end up having more than I usually would. This tends to result in the "thumping hangover effect" after sleeping, and that's what I had when I woke today. The only solution is to get up, be a little active and get the system moving. I did this with exercise, and the headache gradually cleared to a dull "foggy head syndrome" which seems to go away with another sleep, without the naughty foods in-between.
So, for the week, it's been only one seizure, and a little less mobility. I seem to have more difficulty getting the exact word out that ever before, which is frustrating when I have to substitute a less accurate word or flounder about like an idiot. Yes, I know it happens to the best of us, but I'm not keen on the fact that it's increasing in frequency. Yet some things that I can recall, not just from the distant past, surprise me pleasantly.
Saturday, 29 December 2012 7:22 AM.
Healthwise, all going OK. I've been reasonably circumspect and things have settled down in that respect. I'm just taking it quietly.
Wednesday, 26 December 2012 2:31 PM.
Maybe I'm paying the penalty for indulgence yesterday, that being a flute of Bolly in the morning with gifts and a glass of beer with Christmas dinner in the evening together with one or two slightly verboten things for the dinner itself, but hell they all tasted good, and I don't regret them under the circumstances. But just before midnight I had a seizure that was neither long nor strong, concentrated in the arm, neck and kidney area, with a final kick to the lower right hip, knee and ankle. It's quite methodical as you see; one job at a time.
So I am finding walking more difficult now, and was so weary after getting up that I went back to bed before 9.30 am. I slept till 1.00 pm, and I must admit, still feel as though I've run a marathon. Maybe I'll pick up now I've had a shower.
No more to say on the medical front. Farewell Christmas 2012. Alice and Sylvia arrive this evening, all going to schedule. I hope the airlines have their act together!
Monday, 24 December 2012 3:59 PM. ☤ Update ☤
We are back from having the infusion done. It went smoothly but we were disappointed at the 24hr proteinuria test result, which has climbed to its highest ever reading of .51. This is in spite of having had two half-doses of Avastin before today's. We'd hoped that after the six weeks, the effect of lower dosage would drop the proteinuria count.
Our reading of this is that the damage to the kidneys from the years of Avastin has probably already been done, as indicated by the comparatively sudden increase in protein levels over the past few months – but as often happens with kidney damage, it only really shows up at that later stage.
There is no question in our minds about one thing. The Avastin dosage will never return to 100%. To do so would probably knock out kidney function completely in a very short period. So it is a matter of balancing out – of optimising – for slowing the tumour growth, keeping kidneys operating effectively as long as we can, and keeping other body functions running as smoothly as possible.
The scales indicated that although I've been retaining body fluid and superficially I look bulkier than ever, my weight itself is falling - not greatly but consistently over the past few months. I'm not concerned about that right now. In some ways, less weight should help with mobility, but it's important not to lose muscle tone more than can be avoided.
So, unless a wildcard event happens, which is always possible, the same procedure will occur in the New Year – 24hr proteinuria test, and if OK, Avastin infusion on 14 January 2013. We will see if there is evidence of tumour activity over that time, and the only way we can get an indication of that is of greater problems with brain function showing up in known areas and in new ones, and the number and intensity of seizures and headaches.
Monday, 24 December 2012 7:10 AM.
Here I was wondering why so many people yesterday were sending good wishes for the scheduled Avastin infusion 'tomorrow' [i.e., today], when I always have it on Tuesdays, and this morning it clicked. It's Christmas Eve, dopey. The hit is scheduled a day early because who's going to be at Oncology tomorrow???
Are you seeing a pattern developing here? Saturday was Sunday, now Tuesday's Monday. Today might not be yesterday tomorrow. Expect more of this. Just ask Tracey....
I'll report later in the day on the results of today's attempt to have Avastin. Kidneys crossed!
COMMENTS:
Anonymous December 31, 2012 7:04 AM
And an innocent looking piece of Christmas pudding can hold such evil, especially if you have it as breakfast with brandy custard as my daughter Marianne and I did. (With brandy custard of course.) Christmas leftovers are much nicer when leftover than when first served. It's not fair! AnneP
Denis Wright January 1, 2013 7:18 PM
I agree with you about everything here except for one thing. Christmas pudding with brandy custard is never an innocent thing. I suppose that's what makes it so alluring.
Ah, but what a breakfast! You obviously took note of Erma Bombeck's quip about the dessert tray on the Titanic. :)
Anonymous January 1, 2013 8:22 PM
Thank you, I was unfamiliar with her but have had much fun in looking her up. I had heard a few of her sayings before but unattributed! I especially like her talent quote. Anne P.
Denis Wright January 2, 2013 6:55 AM
...which is: 'When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and could say, 'I used everything you gave me.'
Erma Bombeck
Worth going there for some other worthy sentiments e.g.,
IF I HAD MY LIFE TO LIVE OVER
I would have talked less and listened more.
I would have invited friends over to dinner even if the carpet was stained and the sofa faded.
I would have eaten the popcorn in the "good" living room and worried much less about the dirt when someone wanted to light a fire in the fireplace.
I would have taken the time to listen to my grandfather rambling about his youth.
I would have burned the pink candle sculpted like a rose before it melted in storage.
I would have sat on the lawn with my children and not worried about grass stains.
I would have cried and laughed less while watching television, and more while watching life.
. . . but mostly, given another shot at life, I would seize every minute . . . look at it and really see it . . . and never give it back.
Bob Lake January 3, 2013 6:11 PM
Hi Denis, your blog comment box has re-appeared and seems to be working for me again, but will keep your detailed instructions on hand in case I get shut out again. Just to try it out, I will pen another bit of inconsequential drivel. You have been warned.
Your Avatar reference reminds me of a short story I read about 50-60 years ago, in the great days of science fiction. A spaceship from earth landed on a new planet which had crushing gravity and which was bathed in a thick, perpetual nitrogen cloud.
The first of three crewman to explore was put into a transformation chamber that turned him into a 'loper' - a crouching, supple individual, artificially adapted to survive in this deadly environment. He was let out of the spaceship to explore, but didn't return. The captain had to know what had happened to him, so transformed the second crewman into a another loper and sent him out. This crewman didn't return either.
The captain then had no choice; he turned himself into a loper and left the spaceship. As he loped easily along, breathing the clear air and seeing his surroundings for the first time, he thought: "What a beautiful world" ... and loped off, never to return.
To me, this story had an impact that has lasted more than half a century. I don't know why. It is like trying to take a painting or piece of music and subject it to some form of reductionism ... trying to make sense of it, analyse it ... which is when you lose it altogether.
But the loper story still fills me with an indescribable longing.
Denis Wright January 5, 2013 12:41 PM
Amazing as it sounds – though little amazes me any more except for the unfailing capacity of human beings to kill, torture and hurt each other and other life forms willingly – I have a story on my blog list to be written which parallels yours. I remember an Asimov story which had a big impact on me too – and in the broadest way the theme is similar.
I hoped to find a copy of this story online, even if bootleg – but no dice. It doesn't matter – I remember enough about it to say what I want if I don't run out of time first.
Once again it demonstrates the power of myth [story] to make a lasting impression of the psyche; often more so than what some are willing to die for as defenders of some one and only 'truth'.
Anonymous January 3, 2013 9:23 PM
That is such a good story Bob, I love it. We all wish to be lopers, I bet!
I just came on to say, prosaically, that I wonder how much of Denis's puffy feet is due to fluid retention and the kidneys not working so well. This may be useless, but celery juice is a wonderful diuretic and surely can do no harm, either. I have really noticed it whenever I've bothered to take it.
Julie m
Denis Wright January 5, 2013 11:52 AM
Sorry for not responding immediately, Julie, but had to do some research on this one. I feel that celery juice [or raw celery, which I like well enough] would be likely to help as a diuretic, but as usual I had to see what its interaction with Avastin was.
That takes a while because there are so many sources contradicting each other on such matters as health, so many unreliable sources – but I didn't find anything that warned against it re Avastin. And given that I'm on half-strength Avastin, it makes sense that some natural product like this won't overdo the consequences of the artificial anti-angiogenic effect of the drug. [I haven't expressed that well but the general idea is there.]
So I'm willing to give that a go without feeling there's undue risk to the brain or bad interaction with Clexane. Thanks for the tip. I do know that when the swelling is down, everything feels a whole lot better and I'm more mobile.
Our methods now are brutally simple. Research, optimise risk, experiment within limits, see what happens. No-one is to blame if it goes wrong. Miscalculations occur. BUT we know better than the GP or the oncologist what's happening with me and that's why I'm still around.
That may seem arrogant, but it's just stating a fact.
Bob Lake January 4, 2013 9:47 AM
Hey Denis, I just noted the quote which follows 'Comments' ... It's Your Life. I don't know how long it has been there, but I like it. This is a saying that could well apply to every aspect of life, its joys and its trials.
Denis Wright January 5, 2013 11:56 AM
True. As you see in my responses to Julie immediately above, that responsibility is what we're always trying to take.
Bob Lake January 6, 2013 6:34 PM
Depressing news Denis. The deterioration has been inevitable; it has been wonderful you have kept it at bay for so long ... also that you are still writing about it so clearly. We can but hope that you will get another pause in the downturn but, to be realistic, hopes have limitations.
All I can say is that we are hanging in there with you - in spirit - and blessing our own good fortune. In actuality this is all we can do - keep in touch, follow your progress, enjoy your blogs. and hope for the very best that is possible.
As always.
Denis Wright January 7, 2013 10:44 AM
Thanks, Bob, for the encouragement. I refuse to be too depressed, though we see the prognosis quite clearly. I am just thankful that I don't have a depressive personality.
Anonymous January 7, 2013 9:41 PM
You have the most well balanced personality I've ever met. You're a continual lodestar for me -well, along with a few other people and elements that make up my life teachers/friends. Damn seizures!!
See you soon, hopefully on Thursday morning -I'm going to Melbourne on Saturday, be away for 10 days.
Julie M xx
Denis Wright January 10, 2013 12:47 AM
Missed this till now! Please come if/when you can tomorrow. [Errr - later today.] D.
No comments:
Post a Comment
Some iPads simply refuse to post responses. I have no idea why, but be aware of this.
Word verification has been enabled because of an avalanche of spam. SAVE or compose a long comment elsewhere before posting; don’t lose it! View in Preview mode first before trying to post.
Note: Only a member of this blog may post a comment.